Authors (Reference), Country	Aim of Study	Number of Participants	Adolescents or Young Adults	Study Design	Length of Study	Methodology of Assessment	Key Findings	Limitations
Aasebø [30] Norway	Describe the life situation, lifestyle, and common activities of daily life in young adult kidney transplant recipients aged 18–35 years. In addition, compared their HRQoL with a general population sample, adjusting for age, sex, and education.	131	Both	Cross sectional study. Questionnaire. Short Form 36 (SF-36). Comparison made with matched general population.	Retrospective-snapshot	Short Form 36 (SF-36) questionnaire. compared groups using a two-sample t-test or Fisher’s exact test, or the Mann–Whitney U-test.	Recipients reported high participation rates in cultural and sports activities. Majority were working and satisfied. 25% of the total group were not integrated in professional life. The transplant recipients scored lower than the general population on seven of the eight SF-36 scales and the two summary scales after adjusting for age, sex and education. 70% stated had delayed education. 6% were happy with physical appearance-77% reported-ve change since transplant. Higher pain scores than general population.	Self-reported Questionnaire. 47% return rate. Predominance for females to return. Data of clinical status and transplant function not collected.
Akchurin [48] USA	Was there a difference in immunosuppression adherence in groups transitioning to adult services?	27	Adolescents	Retrospective Case control study	2 years	Measured tacrolimus levels. Statistical analyses including t-Test and multivariate analyses.	Transition not associated with changes in medication adherence.	Tacrolimus levels less than ideal to measure adherence. single centre didn’t cover those lost to follow-up
Anthony [11] Canada	To measure quality of life in adolescent transplant recipients and impact on their families.	12	Adolescents	Retrospective pilot study. Case control. Questionnaire.	3 years post transplant. Single study,	VAQOL and General Health, the PedsQL 4.0, PedsQL End Stage Renal Disease Module, and Impact on Family Module	High level of fatigue. Concerns about physical appearance. Reported difficulties in interactions with peer and family. Despite good outcomes family reported negative emotional outcomes, stress and worry. Education delay. Turbulent relationships both peer and family.	Small study. Self reported.
Ashoor [49] USA	To assess the prevalence and types of sexually transmitted infections in paediatric renal transplant patients	49	Adolescents and young adults.	Retrospective cohort observational study.	4 years	Observation	15% of men sexually active. 45% of women. 75% off sexually active women on contraception. 36% sexually active had at least one STI. Most patients rely on nephrologist for preventive care -important to raise awareness of this issue in the transplant community	Small study. Self reporting by patients,
Boucquemont [37] Canada/USA	If day of the week affected teen or young adult adherence to medications	138	Both	Post-hoc analysis of a prospective randomised control trial	15 months	Logistic regression with generalized estimating equations to estimate the association between week- ends/weekdays and each of perfect taking.	Weekends are disruptive to normal routine and patients have reduced adherence to medication at the weekends.	Post-hoc analysis. Small sample.
Bullington [50] USA	Understand opinions of adolescent transplant patients on why not taking medications	12	A	Qualitative	One interview and follow-up	Q-methodology	Three themes- medication issues. Deliberate non-adherence and “troubled adherence”.	Self-reported. Small sample.
Chaturvedi [51] Australia	Assess graft stability and patient satisfaction after transition from children to adult services.	11	Both	Cohort observational. Retrospective review of clinical notes	Over course of two year	Patient evaluations.	1 acute episode of antibody mediated rejection. Inadequate involvement of young people in transition planning. Lack of preparation for transition to adult services.	Small numbers, self reported.
Dobbels [10] Netherlands	assess HRQOL, depressive symptoms, side effect experience and treatment adherence in a sample of adolescent kidney transplant patients, using self-report and parent-report.	26	A	Cross-sectional study	Single episode	Self-reported questionnaires. KIDSCREEN-27 (QOL), a treatment adherence interview, the MTSOSD-59R (side effects) and the Beck Depression Inventory (depression)	Patients reported good QOL. Depressive symptoms occurred in 17.4%, and 75% were non-adherent with their medications. Many show problematic health behaviours. Side effects were increased appetite, fatigue and headache; the most distressing ones were hair loss or thinning of hair, warts on hands or feet, and sores in the mouth or on the lips.	Small. Cross-sectional design.
Hamilton [32] UK	wellbeing and medication adherence are associated with psychosocial factors using data from the Surveying Patients Experiencing Young Adult Kidney Failure (SPEAK) study	417	Both	Survey	Once off survey	multivariable linear regression to examine psychosocial associations with scores on the Warwick–Edinburgh Mental Wellbeing Scale and the eight-item Morisky Medication Adherence Scale.	Wellbeing was positively associated with extraversion, openness, independence, and social support, and negatively associated with neuroticism, negative body image, stigma, psychologic morbidity, and dialysis. Higher medication adherence was associated with living with parents, conscientiousness, physician access satisfaction, patient activation, age, and male sex, and lower adherence was associated with comorbidity, dialysis, education, ethnicity, and psychologic morbidity.	Cross-sectional design limits changes on outcome can not be tracked, directionability between variables could not be assessed.
Jakubowska-Winecka [38] Poland	To determine parental attitudes affect on adolescent medication adherence	197	A	Survey	Once off	M. Plopa’s Parental Attitudes Scale, which distinguishes 5 types of attitudes. Medication adherence was evaluated on the basis of the Morisky Medication Adherence Scale (MMAS-8)	Accepting attitude and overly protective attitude corresponded with increased adherence.	Other factors not controlled in study.
Kärrfelt [43] Sweden	To understand the emotional and psychological adaption of patients after undergoing transplant	20	A	Mixed methods interviews. Quantitative and qualitative interviews.	Once	Thematic analysis	Mostly felt unaffected. Improved relationship with donor. One deceased donor recipient had nightmares about alien kidney. Psychological adaption seemed to rely of denial & avoidance.	High drop out rate. Voluntary recruitment may have led to a selection bias.
Kim [52] South Korea	To understand the experiences of adolescents undergoing renal transplant	9	A	Qualitative descriptive study.	Once	Content analysis	“being different from others,” “not being invited as a decision maker,” “becoming one of them,” “still being different from others,” “having mixed feeling toward mothers,” and “coping with new circumstances.”	Small-specific population
Korus [40] Canada	Understanding the information needs of adolescent transplant recipients.	8	A	Qualitative descriptive study	Once	Content analysis	Transplant a stressful situation. 4 main stressors: changes in body image, wanting to be normal, pain, and breakdown in communication processes. Two coping strategies were gaining more information and seeking social support.	Small study
Kullgren [53] USA	Validate measurement tool “transplant responsibility questionnaire.” And determine between TRQ and adherence	59	A	Survey-TRQ scores vs TAC levels	Once	Bivariate correlations were calculated between TRQ average scores, caregiver–child TRQ discrepancy scores, and adherence. Oneway ANOVAs were used to assess differences between adherent and non-adherent groups on the TRQ	Adherence unrelated to TRQ score. Disparity between parent and recipient perception of self-management. Older more self reliant than younger	Self reported
Lugasi [33] Canada	To assess the identity formation of renal transplant patients and type 1 diabetic patients	85	A	Qualitative	Once	Demographic questionnaire. Quality of Life Profile Adolescent Version (QOLPAV)	Differences in ideological identity, with tx recipeints showing higher levels of diffusion and controls showing higher levels of foreclosure. No differences with respect to interpersonal identity, QOL, perceived control over the QOL domains, and perceived opportunities for growth and development were found	Convenience sampling. Questionnaire based data collection.
Malekahmadi [42] Iran	To evaluate the extent to which socioeconomic, clinical, and psychological characteristics explain the variance in the health-related quality of life of adolescent Iranian kidney transplant recipients.	55	A	Cross-sectional study	Once	Hierarchal regression analysis, the cross-sectional socioeconomic, clinical and psychological variables associated with health outcomes.	The relative predictive power of socioeconomic, clinical, and psychological variables with respect to health-related quality of life was 21.8% (p = 0.088), 21.2% (p = 0.014), and 27.6% (p = 0.001). Psychological factors had a greater relative predictive power in postrenal transplant health-related quality of life of adolescents than did the socioeconomic and clinical characteristics.	Small sample size. Cross-sectional rather than longitudinal analysis.
Massey [31] Netherlands	The aim of this study was to investigate (a) the extent to which age at first renal replacement therapy, achievement of developmental milestones, satisfaction of psychological needs, and coping were related to subjective well-being and medication adherence	62	YA	Cross-sectional interview study	Once	subjective well-being (Positive And Negative Affect Schedule; Satisfaction With Life Scale), medication adherence (Basel Assessment of Adherence to Immunosuppressive Medication Scale), dispositional coping (Brief COPE), achievement of developmental milestones (Course of Life Questionnaire), and satisfaction of psychological needs (Basic Psychological Needs Scale)	Sixty-five percent were classified as nonadherent in the past month. In contrast, subjective self-rated overall adherence was high. None of the variables measured were related to nonadherence. Higher feelings of competence and autonomy, and timely achievement of social and psychosexual developmental milestones were related to higher subjective well-being. Well-being and adherence did not differ according to age at diagnosis or first renal replacement therapy	Limited by cross-sectional and retrospective analysis. Self-selected participants so selection bias may be present. Small sample analysis.
Mellerio, [8] France	To document the semiprofessional outcomes of adults who underwent kidney transplantation before age 16 years between 1985 and 2002	374	A	Retrospective cohort study.	Once	Questionnaire which was then compared to data from the general French population.	The median ages were 27.1 years at survey time and 12.3 years at first transplantation. Of the participants, 31.1% lived with a partner (vs. 52.2%; PG0.01) and 35.7% lived with their parents.	Self-reporting-more frequently women and those with better graft function.
Mintzer [44] USA	To assess prevalence and correlates of self-reported symptoms of posttraumatic stress in a nonreferred sample of adolescent liver, heart, and kidney transplant recipients.	104	Both	Cross-sectional analysis	once	PTSD Index for the Diagnostic and Statistical Manual of Mental Disorders	16% of the adolescents met all symptom criteria for PTSD, and an additional 14.4% met 2 of 3 symptom-cluster criteria. Regression analysis indicated no effect of gender, ethnicity, age at interview, organ type, time since transplant, or age at transplant	Retrospective analysis. Patients transplanted over a large time span 80s to 90s.
Nguyen [55] Canada & USA	To gather the perspectives of recipients, parents, and health professionals concerning their needs, challenges, and potential intervention strategies to design an optimal, multi-component medication adherence intervention	32	Both	Qualitative study design- focus groups	Once	Content analysis-leading to themes	Multi-component behavioural intervention, including an expanded electronic pillbox and companion website, education materials, and customized digitized features to support shared responsibility and communication among recipients, parents, and health professionals were all suggested by participants.	Self-selecting so potential selection bias. Predominantly white population.
Penkower [39] USA	(a) describes the prevalence of psychological distress, (b) describes the prevalence of nonadherence, and (c) explores the association between the recipient’s psychological distress and his/her subsequent medical adherence	22	A	Qualitative design- interviews.	Twice	Beck Depression Inventory II (BDI). State Anxiety subscale of the Spielberger State-Trait Anxiety Scale. State Anger subscale of the Spielberger State-Trait Anger Scale.	At the initial interview, 36.4% had symptoms of depression, 36.4% endorsed anxiety, and 18.2% endorsed excessive state anger. Non-adherence rates were 13.6% for medication, 22.7% for blood work, and 50% for missed clinic.	Small study-pilot. Self-reporting adherence.
Quast [56] USA	The current study examines associations between personality (i.e., agreeableness, conscientiousness, neuroticism) and adherence barriers in a group of adolescent and young adult (AYA) solid organ transplant recipients	90	Both	Cross-sectional study	Once	Agreeableness, Conscientiousness, and Neuroticism scales from the NEO Five-Factor Inventory and the Adolescent Medication Barriers Scale (AMBS)	Lower levels of agreeableness and conscientiousness and higher levels of neuroticism were related to higher self-reported barrier scores (AMBS; r’s ¼ 0.31–0.53, p’s < 0.001). The relations differed by personality factor and barrier type.	Small study, self reporting-limited by cross sectional and retrospective nature of study design.
Quinn [36] USA	Explored the novel role of resilience constructs as protective factors in securing stable HCT among AYA with KT	32 (17 stable, 15 unstable).	Both	Qualitative study	Once	Semi-structured interviews. Content analysis.	Confidence in and connection to one’s healthcare team appear to be linked with a stable HCT among AYA with KT. This suggests that interdependence, the ability to foster connections with and elicit support from healthcare providers, as opposed to complete independence or autonomy, which is often advised in the HCT process, is a critical component of resilience linked to stable HCT.	Small study. Retrospective and clinical factor determining stable vs unstable less clear.
Simons [34] USA	To evaluate whether different factors would be associated with lower mental health scores on the CHQ	39	Adolescents	Comparative study	Once	Semi-structured interviews. Multiple validated questionnaires around medication, knowledge, mental health. Hierarchal regression analyses to determine strength of association.	Perceived frequency of medication side-effects and family conflict significantly contributed to adolescent physical functioning and mental health outcomes. Taken together, transplant consequences and family environment significantly impact physical and mental health outcomes in adolescent transplant recipients	Risk of type 1 error as multiple variables investigated.
Silva [54] Brazil	To assess the prevalence and correlates of nonadherence to immunosuppressive medications in a pediatric kidney transplant population who received free access to immunosuppressive medications within the health care system	156	Adolescents	Single centre cross sectional analysis	Once	Implementation nonadherence to immunosuppressive medications was measured by the 4 questions of the Basel Assessment of Adherence to Immunosuppressive Medications Scale. Multilevel correlates to non—adherence (patient, micro, and macro levels) were assessed	33% were nonadherent to immuno—suppressive medications, mainly in timing (25%) and taking (10.9%) dimensions. Being an adolescent (odds ratio: 2.66; CI, 1.02–6.96), religion other than Catholic or Protestant (odds ratio: 4.33; CI, 1.13–16.67), and family income higher than 4 reference wages (odds ratio: 3.50; CI, 1.14–10.75) were factors associated with nonadherence.	Convenience sample from a single centre. Adherence self-reported. Limitations associated with cross sectional design.
Tielen, Mirjam [57] Netherlands	To identify young people at risk of non-adherent behaviour.	26	Young adults	Comparative study. Q-methodological study.	Once	Questionnaire Q-methodology	Four distinct attitude profiles concerning posttransplant health lifestyle were found among these young adults: (a) concerned and controlled, (b) appearance orientated, (c) opinionated and independent, and (d) easy going and pliable	Self-selecting population. Pilot study.
Tong [35] Australia	To explore experiences and perspectives of adolescent kidney transplant recipients following kidney transplantation	22	Adolescents	Qualitative study	Once	In-depth interviews. Grounded and thematic analysis.	The overarching theme was achieving a sense of normality. Having the same opportunities and potential to achieve as other adolescents facilitated better adjustment, well-being and positive development after transplant.	Variability in some interviews parents present. Wide age range.
Varnell [58] USA	Assess barriers to taking medication for adolescents and young adults	98	Both	Prospective cohort study	Over two years	Patients assessed for 14 barriers to medication adherence using the barriers assessment tool	Patients with an identified barrier to adherence were more likely to have BPAR (p = 0.02) than patients without an identified barrier in the 24-months following barriers assessment.	Single centre
Wolf [7] USA	To quantify physical activity and grip strength in pediatric kidney transplant recipients and describe attitudes about exercise and exercise counseling given concerns about allograft injury	101	Both	Cross sectional analysis.	Once	Patients completed the Physical Activity Questionnaire (PAQ). Grip strength was measured with a dynamometer. We asked about activity limitations and provider counseling. Univariate analysis and multiple linear regression were used to determine independent predictors of PAQ score and grip strength z score.	Median PAQ score was 2.2 (range 0–5) and was lower compared with controls (p < 0.001). The average grip strength z score was −1.1 and −0.7 in the right and left hand, respectively. Predictors of lower grip strength were younger age (p = 0.036), non-African American race (p = 0.029), lower height z score (p = 0.010), and longer percentage of lifetime with kidney disease (p = 0.029).	Non-longitudinal design. Single-centre. Relying on patient recall.
Zelikovsky [59] USA	To examine the potentially modifiable barriers related to adherence among adolescent kidney transplant candidates	56	Adolescents	Cross-sectional study	Once.	Interviews- around medical adherence and semi-structured interviews (parents present). Medical Adherence Measure (MAM) adherence interview. Qualitative Study.	Better knowledge of the medication regimen was associated with fewer missed doses Patients who perceived more barriers had more missed doses. Patients who endorsed “just forget,” the most common barrier (56.4%), reported significantly more missed doses.	Patient self-reporting. Small sample size. Didn’t look at health provider related issues to adherence.