TY - JOUR AU - Craig, Jonathan, C. AB - Abstract Background. Non-adherence to medication regimens after kidney transplantation is a major risk factor for acute rejection and graft loss, yet little is known about the perspectives of kidney transplant recipients on medicine taking. This study aimed to describe the beliefs, experiences and perspectives of kidney transplant recipients on medicine taking. Methods. We conducted a systematic review of qualitative studies of medicine taking after kidney transplantation. Five electronic databases (to Week 3 of January 2010) were searched. Thematic synthesis of the results and conclusions reported in each included study was performed to develop descriptive and analytical themes. Results. We included seven studies involving 207 participants. The six themes identified were (i) attitudes towards medicine taking, its impact on lifestyle, self-image, relationships and outlook on life; (ii) inadvertent forgetfulness, preoccupation with life commitments; (iii) medication properties; (iv) structure of healthcare services, poor access to pharmacy or affordable medications and conflicting medical appointments; (v) personal efforts in managing medications, organizing and devising strategies for taking medicines on time; and (vi) availability of external social support. These underpinned five reported medicine-taking behaviours including not taking medicines, seeking to change medications or dose, missing a dose, varying the timing of doses and vigilant adherence. Conclusions. Considering patients’ attitudes, priorities, current life events, commitments, support systems and healthcare structures can inform interventions to promote concordance between prescribed medication and medicine-taking behaviours. This may improve treatment outcomes and mitigate the risks of non-adherence-related rejection. kidney transplantation, medicine taking, qualitative research, systematic review, treatment adherence Introduction Non-adherence to medication regimens is a major risk factor for acute rejection and graft loss [1–3]. Non-adherence has been defined as the extent to which the patients’ actions do not accord with medical recommendations [4]. Kidney transplant recipients are required to manage a strict regimen of multiple medications, changes in dosage schedules and medication side effects and it is estimated that up to 67% do not take immunosuppressive medications as prescribed [5–7]. Patients who doubt the effectiveness or importance of medication, perceive a lack of autonomy in managing their treatment or are anxious about side effects may be less likely to take their medicines [8,9]. Understanding treatment adherence after kidney transplantation has been the focus of a substantial body of research. In a recent meta-analysis of adherence rates in organ transplantation, the rate of non-adherence to immunosuppressant medication was highest among kidney transplant recipients compared with recipients of other types of solid organ transplant [4]. Past work has examined associations of social, psychological and demographic variables with treatment adherence [1,10,11], measured adherence using Medication Event Monitoring Systems [12,13] and assessed the effectiveness of interventions to promote adherence [14,15]. Quantitative studies that collect data from surveys and subsequently analysed quantitatively do not illuminate the participants’ underlying experiences, meaning and thought processes about their treatment. Little is known about the experiences, beliefs and perspectives of adult transplant kidney recipients on medicine taking and the reasons underlying their medicine-taking behaviours, which can only be illuminated by qualitative work [16]. Also, no previous systematic reviews on this topic have been conducted. In helping patients better manage their medications, healthcare providers need to consider the beliefs and concerns of the patient and provide patients with the capacity to make an informed choice about their medication management [17]. A cross-examination of multiple qualitative studies can provide further insight into the range and depth of the participants’ experiences and understandings about medicine taking, which spans different time periods, sites and contexts. This systematic review aims to summarize and synthesize published qualitative studies on the experiences, perspectives, beliefs and attitudes of kidney transplant recipients on medicine taking. With an understanding of patient perspectives, more effective strategies can be developed to improve medication adherence, which can lead to improved health and treatment outcomes for kidney transplant recipients. Materials and methods Selection criteria Qualitative studies using interviews, focus groups, document analysis or observations to explore the perspectives of adult kidney transplant recipients (aged 18 years or over) on medicine taking were included. Papers were excluded if they used structured questionnaires as the sole method for data collection, quantitative assessments of quality of life or reported only quantitative data not elicited from the patients themselves. Observational epidemiological studies, editorials, reviews, non-research articles and studies that did not elicit data directly from kidney transplant recipients were also excluded. Literature search MeSH terms and text words for both kidney transplantation and drug therapy and immunosuppressive agents were combined and these combined with terms relating to health attitudes and knowledge, motivation, patient education, compliance, adherence, self-concept, psychological stress and patient satisfaction (see Appendix). We searched Medline, PsycINFO, EMBASE and the Cochrane Database from inception until Week 3 of January 2010 and reference lists of relevant studies and reviews and the digital theses archive. Study abstracts were screened then discarded if they did not fit the inclusion criteria (A.T.). The discarded abstracts were checked by a second reviewer (M.H.). Studies that appeared to include relevant data or information were retrieved and their full-text versions were examined by two reviewers independently (A.T., M.H.) for study eligibility. Comprehensiveness of reporting No universally accepted reporting framework or quality appraisal tool exists for any type of qualitative research [18]. There is ongoing debate about how quality can be assessed in qualitative research and whether it should be assessed. Therefore, we examined the explicitness and comprehensiveness of reporting in each primary study using a framework developed for assessing the reporting of qualitative studies using focus groups and interviews [19]. Two reviewers (A.T., M.H.) independently assessed each study using the framework and any disagreement was resolved by discussion. Assessment included details about the research team, study methods, context of the study, analyses and interpretations (Table 2). This aimed to provide contextual details for readers to assess the trustworthiness and transferability of the study findings to their setting [20]. Table 2 Study methods, contextual details and findings reported in primary studies . Reference . Item . [21] . [22] . [23] . [24] . [27] . [25] . [26] . Researcher characteristics  Research interviewer or facilitator identified • • • • • • •  Credentials – • • • • • –  Occupation – • • • • • –  Gender • • • • • • •  Experience and training – – – • – – – Relationship with participants  Relationship established prior to study commencement – – – – – – •  Participant knowledge of the interviewer (e.g. personal goals, reasons for doing the research) – – – – – – – Participant selection  Sampling (e.g. purposive, convenience, consecutive, snowball) • • • • • • •  Method of approach • • • • • • •  Sample size • • • • • • •  Number and/or reason for non-participation • • • – • – • Setting  Setting of data collection • – – • – • •  Presence of non-participants (e.g. family members present) – – • – – – •  Description of the sample • • • • • • • Data collection  Interview guide NA • – • • • •  Repeat interviews NA • NA • • • NA  Audio/visual recording NA • • • • • •  Field notes (e.g. debriefing discussion, contextual details) NA – • – – • •  Duration • • • • – • •  Data (or theoretical) saturation NA • – – NA – •  Transcripts returned to participants NA – – – – – • Data analysis  Number of data coders • • • – – • •  Description of the coding tree – • – • – – •  Derivation of themes • • – • • • •  Protocol for data preparation and transcription NA • • • • • •  Use of software – • • • – – • Reporting  Respondent quotations provided – • • • • • •  Provides a rich description and insight into patient perspectives on medicine taking • • • • • • – . Reference . Item . [21] . [22] . [23] . [24] . [27] . [25] . [26] . Researcher characteristics  Research interviewer or facilitator identified • • • • • • •  Credentials – • • • • • –  Occupation – • • • • • –  Gender • • • • • • •  Experience and training – – – • – – – Relationship with participants  Relationship established prior to study commencement – – – – – – •  Participant knowledge of the interviewer (e.g. personal goals, reasons for doing the research) – – – – – – – Participant selection  Sampling (e.g. purposive, convenience, consecutive, snowball) • • • • • • •  Method of approach • • • • • • •  Sample size • • • • • • •  Number and/or reason for non-participation • • • – • – • Setting  Setting of data collection • – – • – • •  Presence of non-participants (e.g. family members present) – – • – – – •  Description of the sample • • • • • • • Data collection  Interview guide NA • – • • • •  Repeat interviews NA • NA • • • NA  Audio/visual recording NA • • • • • •  Field notes (e.g. debriefing discussion, contextual details) NA – • – – • •  Duration • • • • – • •  Data (or theoretical) saturation NA • – – NA – •  Transcripts returned to participants NA – – – – – • Data analysis  Number of data coders • • • – – • •  Description of the coding tree – • – • – – •  Derivation of themes • • – • • • •  Protocol for data preparation and transcription NA • • • • • •  Use of software – • • • – – • Reporting  Respondent quotations provided – • • • • • •  Provides a rich description and insight into patient perspectives on medicine taking • • • • • • – –, not reported by the study; NA, not applicable to the study. Open in new tab Table 2 Study methods, contextual details and findings reported in primary studies . Reference . Item . [21] . [22] . [23] . [24] . [27] . [25] . [26] . Researcher characteristics  Research interviewer or facilitator identified • • • • • • •  Credentials – • • • • • –  Occupation – • • • • • –  Gender • • • • • • •  Experience and training – – – • – – – Relationship with participants  Relationship established prior to study commencement – – – – – – •  Participant knowledge of the interviewer (e.g. personal goals, reasons for doing the research) – – – – – – – Participant selection  Sampling (e.g. purposive, convenience, consecutive, snowball) • • • • • • •  Method of approach • • • • • • •  Sample size • • • • • • •  Number and/or reason for non-participation • • • – • – • Setting  Setting of data collection • – – • – • •  Presence of non-participants (e.g. family members present) – – • – – – •  Description of the sample • • • • • • • Data collection  Interview guide NA • – • • • •  Repeat interviews NA • NA • • • NA  Audio/visual recording NA • • • • • •  Field notes (e.g. debriefing discussion, contextual details) NA – • – – • •  Duration • • • • – • •  Data (or theoretical) saturation NA • – – NA – •  Transcripts returned to participants NA – – – – – • Data analysis  Number of data coders • • • – – • •  Description of the coding tree – • – • – – •  Derivation of themes • • – • • • •  Protocol for data preparation and transcription NA • • • • • •  Use of software – • • • – – • Reporting  Respondent quotations provided – • • • • • •  Provides a rich description and insight into patient perspectives on medicine taking • • • • • • – . Reference . Item . [21] . [22] . [23] . [24] . [27] . [25] . [26] . Researcher characteristics  Research interviewer or facilitator identified • • • • • • •  Credentials – • • • • • –  Occupation – • • • • • –  Gender • • • • • • •  Experience and training – – – • – – – Relationship with participants  Relationship established prior to study commencement – – – – – – •  Participant knowledge of the interviewer (e.g. personal goals, reasons for doing the research) – – – – – – – Participant selection  Sampling (e.g. purposive, convenience, consecutive, snowball) • • • • • • •  Method of approach • • • • • • •  Sample size • • • • • • •  Number and/or reason for non-participation • • • – • – • Setting  Setting of data collection • – – • – • •  Presence of non-participants (e.g. family members present) – – • – – – •  Description of the sample • • • • • • • Data collection  Interview guide NA • – • • • •  Repeat interviews NA • NA • • • NA  Audio/visual recording NA • • • • • •  Field notes (e.g. debriefing discussion, contextual details) NA – • – – • •  Duration • • • • – • •  Data (or theoretical) saturation NA • – – NA – •  Transcripts returned to participants NA – – – – – • Data analysis  Number of data coders • • • – – • •  Description of the coding tree – • – • – – •  Derivation of themes • • – • • • •  Protocol for data preparation and transcription NA • • • • • •  Use of software – • • • – – • Reporting  Respondent quotations provided – • • • • • •  Provides a rich description and insight into patient perspectives on medicine taking • • • • • • – –, not reported by the study; NA, not applicable to the study. Open in new tab Synthesis of findings We used the technique of thematic synthesis as described by Thomas and Harden to develop descriptive themes and a conceptual framework from the combined findings of each included study [20]. From each paper, we extracted all the text, figures, participant quotations and tables under the heading ‘results’ or ‘findings’ and ‘discussion’ or ‘conclusion’. These were entered into the HyperRESEARCH 2.8.3 (ResearchWare Inc., Randolph, MA) software for storing, coding and searching of qualitative data. Synthesis of the data involved three stages. We performed line-by-line coding of the findings of the primary studies, identified descriptive themes and then developed analytical themes. We selected one paper, coded the text and recorded concepts that related to the experiences, behaviours, beliefs, attitudes and perspectives of kidney transplant recipients on medicine taking and identified common and divergent concepts and ideas. Subsequent papers were analysed similarly, and we translated the concepts from one study to another by adding coded text to existing concepts or created a new concept when necessary. The papers were read again to ensure that all the text relating to the perspectives of kidney transplant recipients on medicine taking were integrated. The concepts were examined for any similarities or differences and then organized into a tree structure of descriptive themes and sub-themes. To extend the findings offered by the primary studies, we used Freemind 0.9.0 Beta 14 (SourceForge Inc., Mountain View, CA) as a tool to map the interrelationships between the themes and to develop additional concepts or analytical themes. Results Literature search and study descriptions The search process is described in Figure 1. The initial search yielded 727 articles. After review, seven studies involving 207 adult kidney transplant recipients were included in the review and the remainder discarded (Figure 1) Characteristics of the included studies are described in Table 1 [21–27]. Four studies used semi-structured interviews [22,24,25,27], of which one had conducted all the interviews over the telephone [24]. Two studies conducted focus groups [23,26] and one distributed and analysed patient diaries [21]. All studies were conducted within the last decade, either in the United States, United Kingdom or Australia. Fig. 1 Open in new tabDownload slide Search strategy to identify qualitative research on medicine-taking perspectives of adult kidney transplant recipients. Fig. 1 Open in new tabDownload slide Search strategy to identify qualitative research on medicine-taking perspectives of adult kidney transplant recipients. Table 1 Characteristics of included studies Study ID . Country . n . Population . Data collection . Response rate (%) . Conceptual approach and/or paradigma . Analysisa . Research topic . Gordon 2009 [22] US 82 New kidney transplant recipients Semi-structured interviews 57.3 Social cognitive theory Content analysis, constant comparative method Medication-related adherence Barriers to medication Strategies to foster medication Gordon 2007 [21] US 39 New kidney transplant recipients (graft <6 months) 4-week diary 51.3 – Constant comparative method, thematic document analysis Extent of medication over time Reasons for non-adherence Orr 2007 [23] UK 26 Stable kidney transplant recipients (graft >2 years) Focus groups 50.0 Grounded theory Constant comparative method, thematic analysis Lived experience in relation to medication adherence Ruppar 2009 [24] US 19 Stable kidney transplant recipients (graft >25 years) Telephone open-ended interviews – Grounded theory Constant comparative method, thematic analysis Medication-taking behaviour Russell 2004 [27] US 1 Non-compliant kidney transplant recipient Semi-structured interview 100.0 – Content analysis Experience of medication non-compliance Russell 2003 [25] US 16 Kidney transplant recipients with a functioning graft Semi-structured interviews – Theory of planned behaviour Constant comparative methods, thematic analysis Medicine-taking beliefs Tong 2009 [26] Australia 24 Transplant recipients with a functioning graft Focus groups 88.0 – Thematic analysis Patient experiences and perspectives of living with chronic kidney disease Study ID . Country . n . Population . Data collection . Response rate (%) . Conceptual approach and/or paradigma . Analysisa . Research topic . Gordon 2009 [22] US 82 New kidney transplant recipients Semi-structured interviews 57.3 Social cognitive theory Content analysis, constant comparative method Medication-related adherence Barriers to medication Strategies to foster medication Gordon 2007 [21] US 39 New kidney transplant recipients (graft <6 months) 4-week diary 51.3 – Constant comparative method, thematic document analysis Extent of medication over time Reasons for non-adherence Orr 2007 [23] UK 26 Stable kidney transplant recipients (graft >2 years) Focus groups 50.0 Grounded theory Constant comparative method, thematic analysis Lived experience in relation to medication adherence Ruppar 2009 [24] US 19 Stable kidney transplant recipients (graft >25 years) Telephone open-ended interviews – Grounded theory Constant comparative method, thematic analysis Medication-taking behaviour Russell 2004 [27] US 1 Non-compliant kidney transplant recipient Semi-structured interview 100.0 – Content analysis Experience of medication non-compliance Russell 2003 [25] US 16 Kidney transplant recipients with a functioning graft Semi-structured interviews – Theory of planned behaviour Constant comparative methods, thematic analysis Medicine-taking beliefs Tong 2009 [26] Australia 24 Transplant recipients with a functioning graft Focus groups 88.0 – Thematic analysis Patient experiences and perspectives of living with chronic kidney disease –, unclear or unable to ascertain. a Definitions: social cognitive theory, a person’s knowledge can be attributed to social interactions, activities and experiences in the world they live in; grounded theory, theories are grounded in the empirical data and built up inductively through a process of careful analysis and comparisons; theory of planned behaviour, behaviour is a function of attitude toward the behaviours, subjective norms and perceived behavioural control; content analysis, typically involves a systematic quantitative analysis of the content of communication; thematic analysis, concepts and theories are inductively derived from the data; constant comparative method, comparisons are made between words, concepts or themes for similarities, differences and patterns. Open in new tab Table 1 Characteristics of included studies Study ID . Country . n . Population . Data collection . Response rate (%) . Conceptual approach and/or paradigma . Analysisa . Research topic . Gordon 2009 [22] US 82 New kidney transplant recipients Semi-structured interviews 57.3 Social cognitive theory Content analysis, constant comparative method Medication-related adherence Barriers to medication Strategies to foster medication Gordon 2007 [21] US 39 New kidney transplant recipients (graft <6 months) 4-week diary 51.3 – Constant comparative method, thematic document analysis Extent of medication over time Reasons for non-adherence Orr 2007 [23] UK 26 Stable kidney transplant recipients (graft >2 years) Focus groups 50.0 Grounded theory Constant comparative method, thematic analysis Lived experience in relation to medication adherence Ruppar 2009 [24] US 19 Stable kidney transplant recipients (graft >25 years) Telephone open-ended interviews – Grounded theory Constant comparative method, thematic analysis Medication-taking behaviour Russell 2004 [27] US 1 Non-compliant kidney transplant recipient Semi-structured interview 100.0 – Content analysis Experience of medication non-compliance Russell 2003 [25] US 16 Kidney transplant recipients with a functioning graft Semi-structured interviews – Theory of planned behaviour Constant comparative methods, thematic analysis Medicine-taking beliefs Tong 2009 [26] Australia 24 Transplant recipients with a functioning graft Focus groups 88.0 – Thematic analysis Patient experiences and perspectives of living with chronic kidney disease Study ID . Country . n . Population . Data collection . Response rate (%) . Conceptual approach and/or paradigma . Analysisa . Research topic . Gordon 2009 [22] US 82 New kidney transplant recipients Semi-structured interviews 57.3 Social cognitive theory Content analysis, constant comparative method Medication-related adherence Barriers to medication Strategies to foster medication Gordon 2007 [21] US 39 New kidney transplant recipients (graft <6 months) 4-week diary 51.3 – Constant comparative method, thematic document analysis Extent of medication over time Reasons for non-adherence Orr 2007 [23] UK 26 Stable kidney transplant recipients (graft >2 years) Focus groups 50.0 Grounded theory Constant comparative method, thematic analysis Lived experience in relation to medication adherence Ruppar 2009 [24] US 19 Stable kidney transplant recipients (graft >25 years) Telephone open-ended interviews – Grounded theory Constant comparative method, thematic analysis Medication-taking behaviour Russell 2004 [27] US 1 Non-compliant kidney transplant recipient Semi-structured interview 100.0 – Content analysis Experience of medication non-compliance Russell 2003 [25] US 16 Kidney transplant recipients with a functioning graft Semi-structured interviews – Theory of planned behaviour Constant comparative methods, thematic analysis Medicine-taking beliefs Tong 2009 [26] Australia 24 Transplant recipients with a functioning graft Focus groups 88.0 – Thematic analysis Patient experiences and perspectives of living with chronic kidney disease –, unclear or unable to ascertain. a Definitions: social cognitive theory, a person’s knowledge can be attributed to social interactions, activities and experiences in the world they live in; grounded theory, theories are grounded in the empirical data and built up inductively through a process of careful analysis and comparisons; theory of planned behaviour, behaviour is a function of attitude toward the behaviours, subjective norms and perceived behavioural control; content analysis, typically involves a systematic quantitative analysis of the content of communication; thematic analysis, concepts and theories are inductively derived from the data; constant comparative method, comparisons are made between words, concepts or themes for similarities, differences and patterns. Open in new tab Comprehensiveness of reporting of included studies The comprehensiveness of reporting of the included studies is described in Table 2. The six studies using focus groups or interviews [22–27] showed somewhat consistent reporting, reporting details on 16–22 of the total 28 items. Although the remaining one study reported nine items, seven items were not applicable as the authors did not use focus group or interview methods [21] (Table 2). All seven studies provided details on participant selection and characteristics [21–27]. Six studies included participant quotations [21,23–27] and the findings of six studies were deemed independently by the two assessors (A.T., M.H.) to offer a rich description of patients’ perspectives on medicine taking after kidney transplantation [21–25,27]. Four studies reported the use of software to store, code and search the data [22–24,26]. Synthesis Six themes on medicine-taking behaviour were identified: (i) attitudes toward medicine taking, (ii) inadvertent forgetfulness, (iii) medication properties, (iv) structure of the health services, (v) personal efforts in managing medications and (vi) availability of external support. These underpinned five medicine-taking behaviours that were discussed by participants of the primary studies, including not taking medicines, seeking to change medications or dose, missing a dose, varying the timing of doses and vigilant adherence defined as patients’ resolute efforts to ensure their behaviour coincides with medical recommendations (Figure 2). Fig. 2 Open in new tabDownload slide Attitudes, experiences and perspectives underpinning medicine-taking behaviour following kidney transplantation. Fig. 2 Open in new tabDownload slide Attitudes, experiences and perspectives underpinning medicine-taking behaviour following kidney transplantation. Attitudes toward medicine taking Attitudes toward medicine taking encompassed a variety of patient views on taking medications in the broader context of current major life events, lifestyle, self-responsibility, outlook on life and relationships with the donor and clinicians. Current major life event: The in-depth case analysis of one middle-aged man found that he had given up taking medications because he was battling an adverse life event. The current major life event had a profound psychological and emotional impact, diminishing that participant’s drive to take medicines as prescribed: ‘I had just separated from my wife and I didn’t care you know. It was hard because we had been married for many years, and of course she gave the kidney and everything.’ [27] (Participant) Lifestyle interference: Some participants believed that medication schedules should not interfere with their lifestyle; for example, delaying a dose so they could sleep in: ‘Many of the patients’ reasons suggest that patients may not desire to have medication time schedules orient their lives.’ [21] (Author) ‘Sometimes you wake up late. You wake up later and you want to eat something before you take them [medications].’ [22] (Participant) Allocating leeway: A few participants believed it was reasonable to allocate a time allowance for each dose. They did not perceive any health consequences in exercising this flexibility: ‘Establishing a personal leeway of time to take immunosuppressive medications was brought up, two older subjects had established a leeway of 1 hour either side of the given time to take their medications.’ [25] (Author) Protecting life: Kidney transplantation offered a new chance at life and participants were motivated to adhere to their medication regimen to prolong graft survival and to avoid dialysis. For some, dialysis was believed to be worse than medication side effects. Participants also adhered out of fear of graft rejection, to minimize the possibility of needing re-transplantation or to avoid reprimand from clinicians: ‘The older subject specifically mentioned that the thought of returning to dialysis makes it easier to take the immunosuppressive medications.’ [25] (Author) Demonstrating responsibility and gratitude: Many participants saw total adherence to medications as a way of demonstrating responsibility for maintaining their own health. According to the participants, adhering to their medication regimen meant they were actively showing their gratitude to the kidney donor and healthcare providers: ‘Their main motivation to adhere to the medical regimen and protect their transplanted kidneys is based on two dimensions. The first of these is their interest in their own survival, and particularly to avoid dialysis. The second is based on their admiration and gratitude towards both the health professionals involved in their care and to kidney donors and their families, leading to their determination not to let these people down.’ [23] (Author) ‘When I got this kidney, I basically, in my heart promised the people, the family that gave me this kidney and God, I would take care of it. It always comes back to me when I have to take my meds, people sacrificed for this and not everybody gets a kidney. I let [the donor family] know that I promise to take care of this kidney.’ [25] (Participant) Some viewed adherence as a way of avoiding what they perceived as ‘reprimand’ or ‘blame’ from their clinicians: ‘You can’t forget [to take your medications]. I’d be afraid to face my consultant if I did that.’ [23] (Participant) ‘They complied with their medication out of an obligation to the hospital and specialists to avoid the risk of graft failure and dialysis therapy and did not want to be blamed if something went wrong.’ [26] (Author) Inadvertent forgetfulness The participants often reported forgetting to fill their medication prescription or to take their medicines. In five studies, being away from home to attend social events, travelling and disruption to their normal routine caused participants to forget to take their medication on time. They felt too preoccupied by work, household duties and social commitments: ‘Being away from home refers predominantly to social occasions like being at a BBQ or at church where patients forgot to bring their medications, and confusion with time change when travelling.’ [21] (Author) ‘I was out of routine. Like maybe I would be going out to eat breakfast with my mom, and so instead of making breakfast and sitting down and taking my pills I would go out with mom to eat breakfast, and so the pills might not get out. When I forget, it’s because the routine is broken and I didn’t think of it.’ [24] (Participant) ‘If you move from a routine then you forget. If you get your routine everyday, you’re OK, but if you go away on holiday or something like that, sometimes you might forget. At home I keep mine in a bowl on the table in front of me so I don’t forget.’ [23] (Participant) ‘Patients (n = 8) reported being so busy as being caught up in an activity that distracted them from remembering their medications…being busy minimised receptivity to cues to take medications, even when at home.’ [22] (Author) Medication properties Medical negotiation: Due to medication side effects, patients sought to alter the dose of certain medications or to change the medication. Some developed familiarity about how the medications would affect them and they tried to negotiate with their specialist to change the medicine or dosage to minimize and counteract side effects: ‘The participants were knowledgeable about their own medication and the side-effects of each one, and medications had, on occasion, been changed due to unpleasant side-effects, increasing knowledge…’ [23] (Author) ‘Some patient negotiated with their specialists to adjust their dosages to counteract the side effects.’ [26] (Author) Tolerating medicine properties: Across the studies, the participants commented on four physical properties of the medications and 14 side effects, which made it difficult for them to take medicines (Table 3). However, if they perceived that dialysis was worse than the medication side effects, the participants would persevere in taking their medications as prescribed and choose to tolerate the side effects: ‘Living with a transplanted kidney was not seen as equivalent to living in full health. There are health problems, including side-effects cause by the drugs, although these are not generally seen as equal in severity to living with regular dialysis.’ [23] (Author) Table 3 Medication properties and side effects . Source . Illustrative quotations . Medication properties   Large size [22,27] ‘…the bigness of the pills. They are huge, and all the pills that I got—I can't swallow them all at one time.’ [22] (Participant)   Multiplicity of medicines [22] –   Unpleasant taste and smell [22,25,27] ‘My wife told me today, “You want me to crush them in applesauce?”’ [22] (Participant)   Stickiness [25] – Side effects   Bone disease/joint pain [23,25] ‘The medication made my bones crumble within 6 months but I still take the tablets.’ [23] (Participant)   Skin thinning [23] ‘Your skin is thin and I have to have a barrier on all the time. I can’t go in the sun at all now.’ [23] (Participant)   Hirsutism [23] ‘Oh God, I looked like a male, I had a fur coat in the summer but you have to put up with it!’ [23] (Participant)   Cancer [23,26] ‘I’d gone from managing dialysis to all of a sudden, supposedly feeling much better but I felt rotten. I had skin cancers, I had all sorts of complications from the medication.’ [26] (Participant)   Psychological (aggression, moodiness, memory loss) [23] ‘Some patients were perplexed about the “high” and the aggression they experienced. The transplant recipients questioned each other about memory loss and lack of concentration that they suspected were related to transplant medications.’ [26] (Author)   Hand tremor/shaking [22,23,25] ‘But at first your hand shakes from the cyclosporin.’ [22] (Participant) ‘The shakes! Which I don't have and are pretty much under control now. But the shaking, until they started cutting down on some of the meds, was just to me, not quite by almost “is it worth it?” Because to me its really embarrassing to be out in public and you go get a cup of coffee and you’re like (shows shaking motion), you see older people shaking due to Parkinson’s or whatever and I thought, “Oh my God, is this going to last forever?”’ [25]   Gastrointestinal (diarrhoea, nausea, stomach pain) [22,25] ‘Your stomach hurts from the medicines.’ [22] (Participant)   Puffy face [22] ‘Prednisone makes your face puffy.’ [22] (Participant)   Weight gain [23,25] ‘The prednisone situation is the thing that is most bothersome as far as weight control…it makes it a little more difficult to control my weight.’ [25] (Participant)   Fatigue [23,27] ‘He also stated that it made him sleepy and groggy and lowered his energy level.’ [27] (Author)   Infections [23,25] –   Swollen gums [23] –   Hair loss [25] –   Dry mouth [25] – . Source . Illustrative quotations . Medication properties   Large size [22,27] ‘…the bigness of the pills. They are huge, and all the pills that I got—I can't swallow them all at one time.’ [22] (Participant)   Multiplicity of medicines [22] –   Unpleasant taste and smell [22,25,27] ‘My wife told me today, “You want me to crush them in applesauce?”’ [22] (Participant)   Stickiness [25] – Side effects   Bone disease/joint pain [23,25] ‘The medication made my bones crumble within 6 months but I still take the tablets.’ [23] (Participant)   Skin thinning [23] ‘Your skin is thin and I have to have a barrier on all the time. I can’t go in the sun at all now.’ [23] (Participant)   Hirsutism [23] ‘Oh God, I looked like a male, I had a fur coat in the summer but you have to put up with it!’ [23] (Participant)   Cancer [23,26] ‘I’d gone from managing dialysis to all of a sudden, supposedly feeling much better but I felt rotten. I had skin cancers, I had all sorts of complications from the medication.’ [26] (Participant)   Psychological (aggression, moodiness, memory loss) [23] ‘Some patients were perplexed about the “high” and the aggression they experienced. The transplant recipients questioned each other about memory loss and lack of concentration that they suspected were related to transplant medications.’ [26] (Author)   Hand tremor/shaking [22,23,25] ‘But at first your hand shakes from the cyclosporin.’ [22] (Participant) ‘The shakes! Which I don't have and are pretty much under control now. But the shaking, until they started cutting down on some of the meds, was just to me, not quite by almost “is it worth it?” Because to me its really embarrassing to be out in public and you go get a cup of coffee and you’re like (shows shaking motion), you see older people shaking due to Parkinson’s or whatever and I thought, “Oh my God, is this going to last forever?”’ [25]   Gastrointestinal (diarrhoea, nausea, stomach pain) [22,25] ‘Your stomach hurts from the medicines.’ [22] (Participant)   Puffy face [22] ‘Prednisone makes your face puffy.’ [22] (Participant)   Weight gain [23,25] ‘The prednisone situation is the thing that is most bothersome as far as weight control…it makes it a little more difficult to control my weight.’ [25] (Participant)   Fatigue [23,27] ‘He also stated that it made him sleepy and groggy and lowered his energy level.’ [27] (Author)   Infections [23,25] –   Swollen gums [23] –   Hair loss [25] –   Dry mouth [25] – –, no illustrative quotations were provided. Open in new tab Table 3 Medication properties and side effects . Source . Illustrative quotations . Medication properties   Large size [22,27] ‘…the bigness of the pills. They are huge, and all the pills that I got—I can't swallow them all at one time.’ [22] (Participant)   Multiplicity of medicines [22] –   Unpleasant taste and smell [22,25,27] ‘My wife told me today, “You want me to crush them in applesauce?”’ [22] (Participant)   Stickiness [25] – Side effects   Bone disease/joint pain [23,25] ‘The medication made my bones crumble within 6 months but I still take the tablets.’ [23] (Participant)   Skin thinning [23] ‘Your skin is thin and I have to have a barrier on all the time. I can’t go in the sun at all now.’ [23] (Participant)   Hirsutism [23] ‘Oh God, I looked like a male, I had a fur coat in the summer but you have to put up with it!’ [23] (Participant)   Cancer [23,26] ‘I’d gone from managing dialysis to all of a sudden, supposedly feeling much better but I felt rotten. I had skin cancers, I had all sorts of complications from the medication.’ [26] (Participant)   Psychological (aggression, moodiness, memory loss) [23] ‘Some patients were perplexed about the “high” and the aggression they experienced. The transplant recipients questioned each other about memory loss and lack of concentration that they suspected were related to transplant medications.’ [26] (Author)   Hand tremor/shaking [22,23,25] ‘But at first your hand shakes from the cyclosporin.’ [22] (Participant) ‘The shakes! Which I don't have and are pretty much under control now. But the shaking, until they started cutting down on some of the meds, was just to me, not quite by almost “is it worth it?” Because to me its really embarrassing to be out in public and you go get a cup of coffee and you’re like (shows shaking motion), you see older people shaking due to Parkinson’s or whatever and I thought, “Oh my God, is this going to last forever?”’ [25]   Gastrointestinal (diarrhoea, nausea, stomach pain) [22,25] ‘Your stomach hurts from the medicines.’ [22] (Participant)   Puffy face [22] ‘Prednisone makes your face puffy.’ [22] (Participant)   Weight gain [23,25] ‘The prednisone situation is the thing that is most bothersome as far as weight control…it makes it a little more difficult to control my weight.’ [25] (Participant)   Fatigue [23,27] ‘He also stated that it made him sleepy and groggy and lowered his energy level.’ [27] (Author)   Infections [23,25] –   Swollen gums [23] –   Hair loss [25] –   Dry mouth [25] – . Source . Illustrative quotations . Medication properties   Large size [22,27] ‘…the bigness of the pills. They are huge, and all the pills that I got—I can't swallow them all at one time.’ [22] (Participant)   Multiplicity of medicines [22] –   Unpleasant taste and smell [22,25,27] ‘My wife told me today, “You want me to crush them in applesauce?”’ [22] (Participant)   Stickiness [25] – Side effects   Bone disease/joint pain [23,25] ‘The medication made my bones crumble within 6 months but I still take the tablets.’ [23] (Participant)   Skin thinning [23] ‘Your skin is thin and I have to have a barrier on all the time. I can’t go in the sun at all now.’ [23] (Participant)   Hirsutism [23] ‘Oh God, I looked like a male, I had a fur coat in the summer but you have to put up with it!’ [23] (Participant)   Cancer [23,26] ‘I’d gone from managing dialysis to all of a sudden, supposedly feeling much better but I felt rotten. I had skin cancers, I had all sorts of complications from the medication.’ [26] (Participant)   Psychological (aggression, moodiness, memory loss) [23] ‘Some patients were perplexed about the “high” and the aggression they experienced. The transplant recipients questioned each other about memory loss and lack of concentration that they suspected were related to transplant medications.’ [26] (Author)   Hand tremor/shaking [22,23,25] ‘But at first your hand shakes from the cyclosporin.’ [22] (Participant) ‘The shakes! Which I don't have and are pretty much under control now. But the shaking, until they started cutting down on some of the meds, was just to me, not quite by almost “is it worth it?” Because to me its really embarrassing to be out in public and you go get a cup of coffee and you’re like (shows shaking motion), you see older people shaking due to Parkinson’s or whatever and I thought, “Oh my God, is this going to last forever?”’ [25]   Gastrointestinal (diarrhoea, nausea, stomach pain) [22,25] ‘Your stomach hurts from the medicines.’ [22] (Participant)   Puffy face [22] ‘Prednisone makes your face puffy.’ [22] (Participant)   Weight gain [23,25] ‘The prednisone situation is the thing that is most bothersome as far as weight control…it makes it a little more difficult to control my weight.’ [25] (Participant)   Fatigue [23,27] ‘He also stated that it made him sleepy and groggy and lowered his energy level.’ [27] (Author)   Infections [23,25] –   Swollen gums [23] –   Hair loss [25] –   Dry mouth [25] – –, no illustrative quotations were provided. Open in new tab One participant reported delaying their medicine taking to settle any nausea prior to taking their medications: ‘I don’t think it’s difficult unless you’re sick or you’re nauseous. I would take the Zantac first to help settle my stomach, but then if it still doesn’t go down or if you throw them up then I’d have to come [to the hospital] and you have to get them by IV if you can’t get them down.’ [22] (Participant) Structure of healthcare services The structure of healthcare services sometimes impeded medication adherence, more specifically in terms of lack of access to pharmacy and affordable medications and conflicting medical appointments. Although rarely indicated by the participants, the inability to pay for medications was a barrier to taking medicines. Others had problems accessing a pharmacy to fill their prescriptions. One study found that patients missed medications due to clinic appointments for tests that prohibited them from taking medications for a period of time prior to the blood tests, undergoing medical procedures or routine follow-up appointments with their doctor [21]: ‘One woman revealed that her husband initially disapproved of her taking the immunosuppressive medication, one because of costs.’ [25] (Author) ‘I didn’t take [medications] a couple of times because I just didn’t have the co-payment money when I moved out of my house and the money situation was right.’ [27] (Participant) ‘An important social factor affecting access to mediations was the difficulty patients experienced in the process of ordering refills from pharmacies for a timely arrival and coordinating their timely delivery.’ [22] (Author) Personal efforts in managing medications To aid remembering to take or order their medicines on time, participants took the initiative to organize their medications and devised strategies to aid their memory. They set up visual cues, alarms, reminder systems, identified a specific location for their medicines and scheduled pharmacy orders. These strategies facilitated the integration of medicine taking as a habitual routine and lessened its intrusiveness in the participants’ daily lives: ‘I got a pill box that says, “morning,” “night.” That works out really well. If I got an empty slot, I know I took them. It’s become a routine.’ [22] (Participant) ‘One participant discussed setting a cell phone alarm as a reminder.’ [24] (Author) ‘My medication is in one spot…I establish that spot…I go right to that spot and take my pills.’ [24] (Participant) ‘…keeping the pharmacy telephone number in plain view on the refrigerator to call in refills.’ [25] (Author) Contingency planning was also used; some participants reported that they always carried extra medications with them or left a supply of medications at work. ‘I carry with me 2 weeks worth just in case, God forbid, anything happens and I can’t get home to it.’ [22] (Participant) ‘I would, in a little plastic bag in my desk drawer, just keep my morning medicine—dosage of whatever I took in the morning. So, if I got to work and I said, “I didn’t take my medicine this morning,” it would be right there…I always had backup.’ [24] (Participant) Availability of external support Strong social support enabled a shared sense of accountability which encouraged participants to take medications strictly as prescribed. Having family, friends, colleagues and pharmacists helped participants to remember to take their medications. Some participants’ explicitly asked others to remind them at specific times during the day. In some instances, the responsibility for remembering was shared between the participant and a family member: ‘But at night time if I lay down after dinner, my son when he’s here, I always tell him, “You know, make sure I’m up at 8 to take my meds.” Which, he does.’ [22] (Participant) ‘Most of the time my wife says, “Have you had your tablets?” Between us we mostly remember.’ [23] (Participant) ‘As I mentioned, my husband is a major role player in this…he actually gets my case of medication and he gets a little coffee table, TV tray or whatever and he sits there and divides out my medicine for me.’ [25] (Participant) ‘I have one lady I work with and she has kind of adopted me. And she checks to be sure that I take my medicines, and she fusses if I don't. She has been calling me every morning to see if I took everything or not. She has been a nurse. That is what helps too. And she will say now if you get a new medicine, you need to be sure to check that it works with whatever. And she gets her little book out and tells me what could happen.’ [25] (Participant) Discussion This synthesis of primary qualitative studies identified six themes on patient beliefs and experiences in medicine taking after receiving a kidney transplant. Attitudes toward medicine taking encompassed patient views of taking medications in the broader context of current major life events, lifestyle, self-responsibility, outlook on life and relationships with the donor and clinicians. Inadvertent forgetfulness was simply not remembering or being preoccupied with life commitments. Medication properties included factors such as size, texture and taste making it difficult to take medications and tolerating side effects. The structure of healthcare services impeding adherence included poor access to pharmacy or affordable medications and conflicting medical appointments. Personal efforts in managing medications pertained to initiatives patients took to organize their medication and to devise reminder strategies. Availability of external social support was having a shared sense of accountability with members of their social network. These underpinned five medication-taking behaviours that included not taking medicines, seeking to change medications or prescribed dose, missing a dose, varying the timing of doses and vigilant adherence to the medication schedule. In contrast with the findings of our review, qualitative studies on medicine taking in other settings have found that patients are cautious about taking medicines, lack trust in the information given about medicines and struggle with stigma [28,29]. Our review demonstrates that the perspectives on medicine taking in the kidney transplantation population are situated in a different context compared with other clinical areas. Patients have to contend with complicated and changing medication schedules and multiplicity of medications, deal with emotions and indebtedness towards clinicians and their organ donor and cope with unpleasant short-term and long-term side effects. Specifically in kidney transplantation, quantitative studies have suggested that stress, feelings of indebtedness, having organizational and reminder tools and having social support have an impact on medicine taking [5,7,30,31]. Also, a recent qualitative study involving multidisciplinary transplant experts identified five important medication adherence factors including patient and professional responsibility, side effects and drug-regimen complexity, support, patient education and the healthcare system [32]. Our study resonates with some of the findings of previous research, but also expands, defines and explains in more depth the medicine-taking behaviours from the perspective of kidney transplant recipients. The study used rigorous systematic review methods, which included a comprehensive literature search using predetermined criteria and an assessment of study reporting using an explicit framework that allows readers to ascertain for themselves the quality of the study and its transferability to their own setting. We synthesized findings using a transparent technique used in previous systematic reviews on patient experiences and perspectives [20,33–35]. We used software to record an auditable development of themes, which can be used to ascertain whether these reflect the findings of the primary studies. Although the review included seven studies, the synthesis of findings from multiple studies generated a higher level of analytical constructs as demonstrated in Figure 2. Studies that provided richer description contributed to a greater extent in the final analysis. Also, the consistency of results across studies, albeit conducted in various countries and contexts, suggests that the findings are widely transferable. A limitation of this review was that we analysed data reported by the authors of the primary studies and their interpretations; no attempt was made to access the original data of the primary studies. Further research is needed to expand the analytical framework we developed (Figure 2). The studies included in this review focussed on immunosuppressive therapy, whereas little was mentioned about other medications including prophylactic antimicrobials, pharmaceutical or lifestyle interventions for co-morbidities including hypertension and diabetes mellitus. Little explanation for outright non-adherence was provided by the existing studies, but research has found that adherence deteriorates over time [6,36]. For these reasons, we suggest that future qualitative studies use purposive sampling of patients who choose not to take their medications and to capture both new and stable transplant recipients in the study sample. Also, more understanding is needed about the influence of the physical medication properties and side effects on medicine-taking behaviours. We also recommend that patient perspectives be incorporated in the design, implementation and evaluation of further work on interventions for improving concordance. To date, only a few randomized controlled trials of interventions to improve medication adherence have been completed, and it was unclear where patient input was sought or incorporated [14]. Randomized controlled trials to assess the effectiveness of novel interventions compared with standard practice or an alternative intervention for medication adherence are suggested. Interventions may include multiple components such as educational workshops, social support or practical reminder devices such as an alarm and prescription refill reminders. Strict treatment adherence is advocated to reduce the risk of graft rejection and mortality. A systematic review of communication between patients and healthcare professionals about medicines indicated that patient participation was associated with positive outcomes and healthcare professionals who dominated the discussion during clinical consultations hindered patient involvement [37]. The findings of our study can inform healthcare providers involved in the care of kidney transplant recipients about prescribing and communication strategies to promote concordance. Concordance, advocated as an alternative approach to replace the more traditional notions of patient compliance and adherence, is defined as ‘shared decision making and arriving at an agreement that respects the values and wishes and beliefs of the patients’ [17]. Based on the findings of this review, suggestions that may promote concordance are provided in Table 4. Table 4 Suggestions for improving medication concordance in kidney transplant recipients Domain . Suggestions . Communication and consultation Inquire about life events (if necessary, refer to psychological or counselling services) Remind recipients of short-term and long-term consequences of non-adherence Identify people in the recipient's social support network to share accountability Encourage open discussion and problem solving to counteract medication side effects Discuss how the medication schedule can be integrated into daily living Patient education and resources Emphasize the benefits of sustained and successful transplantation Facilitate networking with donors and families (e.g. highlight the donor journey) Provide patient stories about kidney rejection and consequences due to non-adherence Practical devices and tools Pill counters Alarms (phone, clocks, watch) Prescription refill reminders (mail, email, phone call, phone s.m.s.) Visual cues (e.g. calendars, stickers with information updated as prescriptions change) Travel medication packs Contingency packs (extra supply of medications) Healthcare system Ensure clinic appointments do not conflict with medication schedules Provide easy access to local pharmacy services (e.g. automated online orders) Facilitate access to financial support Domain . Suggestions . Communication and consultation Inquire about life events (if necessary, refer to psychological or counselling services) Remind recipients of short-term and long-term consequences of non-adherence Identify people in the recipient's social support network to share accountability Encourage open discussion and problem solving to counteract medication side effects Discuss how the medication schedule can be integrated into daily living Patient education and resources Emphasize the benefits of sustained and successful transplantation Facilitate networking with donors and families (e.g. highlight the donor journey) Provide patient stories about kidney rejection and consequences due to non-adherence Practical devices and tools Pill counters Alarms (phone, clocks, watch) Prescription refill reminders (mail, email, phone call, phone s.m.s.) Visual cues (e.g. calendars, stickers with information updated as prescriptions change) Travel medication packs Contingency packs (extra supply of medications) Healthcare system Ensure clinic appointments do not conflict with medication schedules Provide easy access to local pharmacy services (e.g. automated online orders) Facilitate access to financial support Open in new tab Table 4 Suggestions for improving medication concordance in kidney transplant recipients Domain . Suggestions . Communication and consultation Inquire about life events (if necessary, refer to psychological or counselling services) Remind recipients of short-term and long-term consequences of non-adherence Identify people in the recipient's social support network to share accountability Encourage open discussion and problem solving to counteract medication side effects Discuss how the medication schedule can be integrated into daily living Patient education and resources Emphasize the benefits of sustained and successful transplantation Facilitate networking with donors and families (e.g. highlight the donor journey) Provide patient stories about kidney rejection and consequences due to non-adherence Practical devices and tools Pill counters Alarms (phone, clocks, watch) Prescription refill reminders (mail, email, phone call, phone s.m.s.) Visual cues (e.g. calendars, stickers with information updated as prescriptions change) Travel medication packs Contingency packs (extra supply of medications) Healthcare system Ensure clinic appointments do not conflict with medication schedules Provide easy access to local pharmacy services (e.g. automated online orders) Facilitate access to financial support Domain . Suggestions . Communication and consultation Inquire about life events (if necessary, refer to psychological or counselling services) Remind recipients of short-term and long-term consequences of non-adherence Identify people in the recipient's social support network to share accountability Encourage open discussion and problem solving to counteract medication side effects Discuss how the medication schedule can be integrated into daily living Patient education and resources Emphasize the benefits of sustained and successful transplantation Facilitate networking with donors and families (e.g. highlight the donor journey) Provide patient stories about kidney rejection and consequences due to non-adherence Practical devices and tools Pill counters Alarms (phone, clocks, watch) Prescription refill reminders (mail, email, phone call, phone s.m.s.) Visual cues (e.g. calendars, stickers with information updated as prescriptions change) Travel medication packs Contingency packs (extra supply of medications) Healthcare system Ensure clinic appointments do not conflict with medication schedules Provide easy access to local pharmacy services (e.g. automated online orders) Facilitate access to financial support Open in new tab Transplant centres need to have a clear and well-structured action plan for improving medication concordance. This may include professional training on how to communicate effectively with patients about medicine taking and how to consider patients’ values, preferences and beliefs during consultation. Resources should also be allocated to patient education, social support and resources, which can positively reinforce the importance of taking medicines. By engaging with patients, innovative practical devices and reminder tools could be developed, adapted and tested to better meet patients’ needs. Post-transplantation follow-up needs to be individualized to encompass a shared understanding of the patients’ attitudes, priorities, life commitments and stressors, support systems and healthcare structures in order to promote concordance between medication prescription and the medicine-taking behaviours of kidney transplant recipients. This is likely to improve health and treatment outcomes, improve patient satisfaction and mitigate the risk of non-adherence-related rejection. Acknowledgement This work was supported by the Australian and New Zealand Society of Nephrology (ANZSN) Amgen Quality Assurance Grant. Conflict of interest statement. None declared. Appendix: search terms Medline . Embase . PsycINFO . 1. Exp Kidney Transplantation/ 1. Exp Kidney Transplantation/ 1. Exp Organ Transplantation/or exp Kidney Diseases/ 2. Exp Organ Transplantation/ 2. Exp Organ Transplantation. 2. Kidney transplant$.tw 3. Or/1–2 3. Or/1–2 3. Or/1–2 4. Drug Therapy/ 4. Exp Drug Therapy/ 4. Exp Drug Therapy/ 5. Immunosuppressive Agents/ 5. Exp Immunosuppressive Agent/ 5. Immunosuppress$.tw 6. Or/4–5 6. Or/4–5 6. Or/4–5 7. Attitude to Health/ 7. 3 and 6 7. 3 and 6 8. Health Knowledge, Attitudes, Practice/ 8. Attitude/or Attitude to Health/or Psychological Aspect/ 8. Exp Health Behavior/or exp treatment barriers/or exp knowledge level/ 9. Motivation/ 9. Education/or Health Education/ 9. Exp Drug Usage Attitudes/ 10. Patient Education as Topic/ 10. Motivation/ 10. Exp Treatment Compliance/or exp Psychosocial Factors/ 11. Treatment Refusal/ 11. Patient Compliance/ 11. Exp Self Concept/ 12. Patient Compliance/ 12. Patient Attitude/or Treatment Refusal 12. Exp Psychological Stress/ 13. Body Image/or Self Concept/ 13. Body Image/ 13. Exp Cognitive Processes/ 14. Stress, Psychological/ 14. Self Concept/ 14. Exp Coping Behavior/ 15. Medication Adherence/ 15. Mental Stress/ 15. Adhere$.tw 16. Adhere$.tw 16. Patient Satisfaction or Patient Attitude/ 16. Compli$.tw 17. Compli$.tw 17. Adhere$.tw 17. Concordan$.tw 18. Concordan$.tw 18. Compli$.tw 18. Or/7–16 19. Or/7–18 19. Concordan$.tw 19. 7 and 18 20. 3 and 6 and 19 20. Or/8–19 21. 7 and 20 Medline . Embase . PsycINFO . 1. Exp Kidney Transplantation/ 1. Exp Kidney Transplantation/ 1. Exp Organ Transplantation/or exp Kidney Diseases/ 2. Exp Organ Transplantation/ 2. Exp Organ Transplantation. 2. Kidney transplant$.tw 3. Or/1–2 3. Or/1–2 3. Or/1–2 4. Drug Therapy/ 4. Exp Drug Therapy/ 4. Exp Drug Therapy/ 5. Immunosuppressive Agents/ 5. Exp Immunosuppressive Agent/ 5. Immunosuppress$.tw 6. Or/4–5 6. Or/4–5 6. Or/4–5 7. Attitude to Health/ 7. 3 and 6 7. 3 and 6 8. Health Knowledge, Attitudes, Practice/ 8. Attitude/or Attitude to Health/or Psychological Aspect/ 8. Exp Health Behavior/or exp treatment barriers/or exp knowledge level/ 9. Motivation/ 9. Education/or Health Education/ 9. Exp Drug Usage Attitudes/ 10. Patient Education as Topic/ 10. Motivation/ 10. Exp Treatment Compliance/or exp Psychosocial Factors/ 11. Treatment Refusal/ 11. Patient Compliance/ 11. Exp Self Concept/ 12. Patient Compliance/ 12. Patient Attitude/or Treatment Refusal 12. Exp Psychological Stress/ 13. Body Image/or Self Concept/ 13. Body Image/ 13. Exp Cognitive Processes/ 14. Stress, Psychological/ 14. Self Concept/ 14. Exp Coping Behavior/ 15. Medication Adherence/ 15. Mental Stress/ 15. Adhere$.tw 16. Adhere$.tw 16. Patient Satisfaction or Patient Attitude/ 16. Compli$.tw 17. Compli$.tw 17. Adhere$.tw 17. Concordan$.tw 18. Concordan$.tw 18. Compli$.tw 18. Or/7–16 19. Or/7–18 19. Concordan$.tw 19. 7 and 18 20. 3 and 6 and 19 20. Or/8–19 21. 7 and 20 Open in new tab References 1 Butler JA , Peveler RC , Roderick P , et al. Modifiable risk factors for non-adherence to immunosuppressants in renal transplant recipients: a cross-sectional study , Nephrol Dial Transplant , 2004 , vol. 19 (pg. 3144 - 3149 ) Google Scholar Crossref Search ADS PubMed WorldCat 2 Nevins TE , Kruse L , Skeans MA , et al. The natural history of azathioprine compliance after renal transplantation , Kidney Int , 2001 , vol. 60 (pg. 1565 - 1570 ) Google Scholar Crossref Search ADS PubMed WorldCat 3 Vlaminck H , Maes B , Evers G , et al. Prospective study on late consequences of subclinical non-compliance with immunosuppressive therapy in renal transplant patients , Am J Transplant , 2004 , vol. 4 (pg. 1509 - 1513 ) Google Scholar Crossref Search ADS PubMed WorldCat 4 Dew MA , DiMartini AF , De Vito Dabbs A , et al. Rates and risk factors for nonadherence to the medical regimen after adult solid organ transplantation , Transplantation , 2007 , vol. 83 (pg. 858 - 873 ) Google Scholar Crossref Search ADS PubMed WorldCat 5 Denhaerynck K , Dobbels F , Cleemput I , et al. Prevalence, consequences, and determinants of nonadherence in adult renal transplant patients: a literature review , Transpl Int , 2005 , vol. 18 (pg. 1121 - 1133 ) Google Scholar Crossref Search ADS PubMed WorldCat 6 Frazier PA , Davis-Ali SH , Dahl KE . Correlates of noncompliance among renal transplant recipients , Clin Transpl , 1994 , vol. 8 (pg. 550 - 557 ) OpenURL Placeholder Text WorldCat 7 Sketris L , Waite N , Grobler K , et al. Factors affecting compliance with cyclosporine in adult renal transplant patients , Transplant Proc , 1994 , vol. 26 (pg. 2538 - 2541 ) Google Scholar PubMed OpenURL Placeholder Text WorldCat 8 Greenstein S , Bonita S . Compliance and noncompliance in patients with a functioning renal transplant: a multicenter study , Transplantation , 1998 , vol. 66 (pg. 1718 - 1726 ) Google Scholar Crossref Search ADS PubMed WorldCat 9 Gremigni P , Bacchi F , Turrini C , et al. Psychological factors associated with medication adherence following renal transplantation , Clin Transpl , 2007 , vol. 21 (pg. 710 - 715 ) OpenURL Placeholder Text WorldCat 10 Chisolm MA , Williamson GM , Lance CE , et al. Predicting adherence to immunosuppressant therapy: a prospective analysis of the theory of planned behaviour , Nephrol Dial Transplant , 2007 , vol. 22 (pg. 2339 - 2348 ) Google Scholar Crossref Search ADS PubMed WorldCat 11 Raiz LR , Kilty KM , Henry ML , et al. Medication compliance following renal transplantation , Transplantation , 1999 , vol. 68 (pg. 51 - 55 ) Google Scholar Crossref Search ADS PubMed WorldCat 12 Shelimer DA , Zelikovsky N . The challenges of using medication event monitoring technology with pediatric transplant patients , Pediatr Transplant , 2007 , vol. 11 (pg. 422 - 428 ) Google Scholar Crossref Search ADS PubMed WorldCat 13 Dusing R , Lottermoser K , Mengden T . Compliance with drug therapy—new answers to an old question , Nephrol Dial Transplant , 2001 , vol. 16 (pg. 1317 - 1321 ) Google Scholar Crossref Search ADS PubMed WorldCat 14 De Bleser L , Matteson M , Dobbels F , et al. Interventions to improve medication-adherence after transplantation: a systematic review , Transpl Int , 2009 , vol. 22 (pg. 780 - 797 ) Google Scholar Crossref Search ADS PubMed WorldCat 15 De Geest S , Schafer-Keller P , Denhaerynck K , et al. Supporting medication adherence in renal transplantation (SMART): a pilot RCT to improve adherence to immunosuppressive regimens , Clin Transpl , 2006 , vol. 20 (pg. 359 - 369 ) Google Scholar Crossref Search ADS WorldCat 16 Wainwright SP , Gould D . Non-adherence with medications in organ transplant patients: a literature review , J Adv Nurs , 1997 , vol. 26 (pg. 968 - 977 ) Google Scholar Crossref Search ADS PubMed WorldCat 17 Jones G . Prescribing and taking medicines , Br Med J , 2003 , vol. 327 pg. 819 Google Scholar Crossref Search ADS WorldCat 18 Dixon-Woods M , Shaw RL , Sagawal A , et al. The problem of appraising qualitative research , Qual Saf Health Care , 2004 , vol. 13 (pg. 223 - 225 ) Google Scholar Crossref Search ADS PubMed WorldCat 19 Tong A , Sainsbury P , Craig JC . Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups , Int J Qual Health Care , 2008 , vol. 19 6 (pg. 349 - 357 ) Google Scholar Crossref Search ADS WorldCat 20 Thomas J , Harden A . Methods for the thematic synthesis of qualitative research in systematic reviews , BMC Med Res Methodol , 2008 , vol. 8 pg. 45 Google Scholar Crossref Search ADS PubMed WorldCat 21 Gordon EJ , Prohaska TR , Gallant MP , et al. Adherence to immunosuppression: a prospective diary study , Transplant Proc , 2007 , vol. 39 (pg. 3081 - 3085 ) Google Scholar Crossref Search ADS PubMed WorldCat 22 Gordon EJ , Gallant MP , Sehgal AR , et al. Medication-taking among adult renal transplant recipients , Transpl Int , 2009 , vol. 22 (pg. 534 - 545 ) Google Scholar Crossref Search ADS PubMed WorldCat 23 Orr A , Orr D , Willis S , et al. Patients’ perceptions of factors influencing adherence to medication following kidney transplant , Psychol Health Med , 2007 , vol. 12 (pg. 509 - 517 ) Google Scholar Crossref Search ADS PubMed WorldCat 24 Ruppar TM , Russell CL . Medication adherence in successful kidney transplant recipients , Prog Transplant , 2009 , vol. 19 (pg. 167 - 172 ) Google Scholar Crossref Search ADS PubMed WorldCat 25 Russell CL , Conn VS , Ashbaugh C . Medication-taking beliefs of adult renal transplant recipients , Clin Nurse Spec , 2003 , vol. 17 (pg. 200 - 208 ) Google Scholar Crossref Search ADS PubMed WorldCat 26 Tong A , Sainsbury P , Chadban S , et al. Patients’ experiences and perspective of living with CKD , Am J Kidney Dis , 2009 , vol. 53 (pg. 689 - 700 ) Google Scholar Crossref Search ADS PubMed WorldCat 27 Russell CL , Ashbaugh C . The experience of immunosuppressive medication noncompliance: a case study , Dial Transplant , 2004 , vol. 33 (pg. 610 - 623 ) OpenURL Placeholder Text WorldCat 28 Pound P , Britton P , Morgan M , et al. Resisting medicines: a synthesis of qualitative studies on medicine taking , Soc Sci Med , 2005 , vol. 61 (pg. 133 - 155 ) Google Scholar Crossref Search ADS PubMed WorldCat 29 Williams AF , Manias E , Walker RG . Adherence to multiple, prescribed medications in diabetic kidney disease: a qualitative study of consumers’ and health professionals’ perspectives , Int J Nurs Stud , 2008 , vol. 45 (pg. 1742 - 1756 ) Google Scholar Crossref Search ADS PubMed WorldCat 30 Achille MA , Ouellette A , Fournier S , et al. Impact of stress, distress and feelings of indebtedness on adherence to immunosuppressants following kidney transplantation , Clin Transpl , 2006 , vol. 20 (pg. 301 - 306 ) Google Scholar Crossref Search ADS WorldCat 31 Denhaerynck K , Steiger J , Bock A , et al. Prevalence and risk factors of non-adherence with immunosuppressive medication in kidney transplant patients , Am J Transplant , 2007 , vol. 7 (pg. 108 - 116 ) Google Scholar Crossref Search ADS PubMed WorldCat 32 O’Grady JGM , Asderakis A , Bradley R , et al. Multidisciplinary insights into optimizing adherence after solid organ transplantation , Transplantation , 2010 , vol. 89 (pg. 627 - 632 ) Google Scholar Crossref Search ADS PubMed WorldCat 33 Morton R , Tong A , Howard K , et al. The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies , Br Med J , 2010 , vol. 340 pg. c112 (online first) Google Scholar Crossref Search ADS WorldCat 34 Harden A , Brunton G , Fletcher A , et al. Teenage pregnancy and social disadvantage: systematic review integrating controlled trials and qualitative studies , Br Med J , 2009 , vol. 339 pg. b4254 (online first) Google Scholar Crossref Search ADS WorldCat 35 Tong A , Morton R , Howard K , et al. Adolescent experiences following organ transplantation: a review of qualitative studies , J Pediatr , 2009 , vol. 155 (pg. 542 - 549 ) Google Scholar Crossref Search ADS PubMed WorldCat 36 Kiley DJ , Lam CS , Pollak R . A study of treatment compliance following kidney transplantation , Transplantation , 2003 , vol. 55 (pg. 51 - 56 ) Google Scholar Crossref Search ADS WorldCat 37 Stevenson FA , Cox K , Britten N , et al. A systematic review of the research on communication between patients and health care professional about medicine: the consequences for concordance , Health Expect , 2004 , vol. 7 (pg. 235 - 245 ) Google Scholar Crossref Search ADS PubMed WorldCat © The Author 2010. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org Oxford University Press TI - The perspectives of kidney transplant recipients on medicine taking: a systematic review of qualitative studies JF - Nephrology Dialysis Transplantation DO - 10.1093/ndt/gfq376 DA - 2011-01-01 UR - https://www.deepdyve.com/lp/oxford-university-press/the-perspectives-of-kidney-transplant-recipients-on-medicine-taking-a-3YNz3ap6v7 SP - 344 EP - 354 VL - 26 IS - 1 DP - DeepDyve ER -