Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ).

BACKGROUND: The transition onto dialysis is a stressful time that affects both patients and their partners. Research suggests that psychological and interpersonal characteristics within the couple are related to how well they adapt to dialysis. The aim of this multi-phase, mixed methods study was to develop a measure, the Starting Dialysis Questionnaire (SDQ), that is applicable to both patients and their partners and assesses their own thoughts and feelings about these constructs. METHODS: Data from semi-structured interviews with patients and their partners (n = 22 couples) were analysed using theoretical thematic analysis to identify and define constructs related to quality of life (QOL). Next, items addressing these constructs were derived from the interviews. Then, cognitive interviews were conducted with patients with chronic kidney disease and their partners (n = 5 couples) to assess the face validity and comprehensibility of the items. Lastly, preliminary psychometric properties were evaluated in a sample of patients preparing to start dialysis and their partners (n = 83 couples). RESULTS: Three themes related to QOL were identified, namely dialysis expectations, accepting dialysis and dyadic relationship characteristics. The cognitive interviews refined the SDQ and established its face validity. Psychometric assessments indicated that overall the items performed well and did not show significant floor or ceiling effects. Good internal consistency was found within the three domains, and items correlated within the domains. CONCLUSIONS: The SDQ is a measure (34 items) that assesses key psychological and interpersonal factors in patients and their partners as they start dialysis. It shows good preliminary psychometric properties; however, a large-scale field trial is needed to establish its validity. Once validated, it could offer a clinically useful tool to assist clinicians in preparing patients and partners for dialysis.

Quality of life improved for patients after starting dialysis but is impaired, initially, for their partners: a multi-centre, longitudinal study.

BACKGROUND: Quality of life (QOL) is important to patients with end stage renal disease and their partners. Despite the first 12 weeks being a critical time in the treatment pathway, limited research exists which examines how the transition onto dialysis impacts QOL. In this study we measured QOL in patients and their partners at pre-dialysis and over the first 12 weeks on dialysis to investigate QOL during this crucial period. METHODS: Patients and their partners, recruited from 10 renal units in England, completed questionnaires at pre-dialysis (n = 166 participants, 83 couples), 6 weeks (n = 90 participants, 45 couples) and 12 weeks (n = 78, 39 couples) after starting dialysis. On each occasion participants completed a QOL questionnaire (WHOQOL-BREF). Multilevel modelling accommodated the nested structure of couples with repeated measures within participants. Three-level random intercept models estimated changes in WHOQOL general QOL and its four domains (Physical, Psychological, Social and Environment). Two-level random intercept models assessed the relationship between baseline clinical and socio-demographic variables with changes in general QOL. RESULTS: Patients reported positive changes in general QOL from pre-dialysis to 6 weeks (ß = 0.42, p < 0.001, 95% CI 0.19, 0.65) and from pre-dialysis to 12 weeks (ß = 0.47, p < 0.001, 95% CI 0.24, 0.71). Partners' general QOL decreased significantly from pre-dialysis to 6 weeks (ß = - 0.24, p = 0.04, 95% CI -0.47, - 0.01) but returned to its original level at 12 weeks. Patients reported improvements in the physical domain between pre-dialysis and 12 weeks (ß = 6.56, p < 0.004, 95% CI 2.10, 11.03). No other domains changed significantly in patients or partners. Only in patients were there significant associations between moderator variables and general QOL. High comorbidity risk level and diabetes were associated with poorer QOL at pre-dialysis whereas being female and having an arteriovenous fistula were linked with improvements in general QOL. CONCLUSIONS: Patients reported significant improvements in their general and physical QOL after starting dialysis. Partners' general QOL worsened after patients started dialysis but improved by 12 weeks. Both patients and partners may benefit from additional educational and counselling services in the lead up to, and immediately after starting dialysis, which could facilitate the transition onto dialysis and improve QOL in both. STUDY REGISTRATION: This study was adopted on the NIHR Clinical Research Network (UK). The details of this study are registered on the Research Registry website (www.researchregistry.com). The identifier for this study is researchregistry2574.

Correction to: Quality of life improved for patients after starting dialysis but is impaired, initially, for their partners: a multi-centre, longitudinal study.

An amendment to this paper has been published and can be accessed via the original article.

Impact of Dialysis on the Dyadic Relationship Between Male Patients and Their Female Partners.

The objective of this study was to explore the impact of three early phases of renal dialysis, namely pre-dialysis, starting dialysis, and establishing dialysis, on dyadic relationships. Twenty UK-based dyads (20 male patients and their female partners) participated in semi-structured interviews and discussed the effects of dialysis on themselves and their relationship. Dyadic thematic analysis, facilitated by dyadic-level charting, integrated participants' experiences and enabled identification of patterns across dyads. We found that dialysis had positive and negative influences on identity, social relationships, and mental health, forming the themes: Prioritizing the Patient, Carrying the Burden, and Changing Identities. The final theme, Managing the Relationship, described how dyads prevented dialysis from negatively impacting their relationship. Dyadic-level charting provided a systematic examination of individual and dyadic experiences. These findings indicate that access to informational and support services for dyads as they prepare to start dialysis may minimize negative effects on their relationship.

Improving the quality of prison research: A qualitative study of ex-offender service user involvement in prison suicide prevention research.

BACKGROUND: Suicide is the leading cause of avoidable death in prisons worldwide and suicide prevention is an international priority. Consequently, there is an urgent need to develop evidence-based treatments. We conducted a randomized controlled trial of a novel suicide prevention psychological therapy for male prisoners. To promote ecological validity by addressing the "real-world" situation of suicidal prisoners, we involved a consultant group of ex-offenders with past experience of being suicidal during imprisonment. Service user involvement in prison research is challenging and underdeveloped. OBJECTIVE: We aimed to investigate the ex-offender service user consultants' experiences of being involved in the research. DESIGN: Individual qualitative interviews were conducted and analysed using an Interpretative Phenomenology Analysis (IPA) framework. SETTING/PARTICIPANTS: The study was conducted at a university in North England, UK, comprising four ex-offenders with experience of being suicidal during past imprisonments. RESULTS: Two superordinate themes were identified: "Working Together" depicted participants' perceptions of the pivotal role of good relationships with researchers, and "Journey of Change" outlined how participants' involvement in the research impacted on their personal lives. DISCUSSION: Little is known about how to successfully involve ex-offender service users in research. Our results indicate the conditions necessary for successfully engaging ex-offender service users in research and have important implications for improving the quality of prison research. CONCLUSIONS: Involving forensic service users in research is feasible and should be encouraged, as despite certain challenges, it is highly rewarding both for the research and the ex-offender service users.

Symptom clusters in chronic kidney disease and their association with people's ability to perform usual activities.

BACKGROUND: People living with a long-term condition, such as chronic kidney disease (CKD), often suffer from multiple symptoms simultaneously, making symptom management challenging. This study aimed to identify symptom clusters in adults with CKD across treatment groups and investigate their association with people's ability to perform their usual activities. METHODS: We conducted a secondary analysis of both cross-sectional and longitudinal data collected as part of a national service improvement programme in 14 kidney centres in England, UK. This data included symptom severity (17 items, POS-S Renal) and the extent to which people had problems performing their usual activities (single item, EQ-5D-5L). We categorised data by treatment group: haemodialysis (n = 1,462), transplantation (n = 866), peritoneal dialysis (n = 127), or CKD without kidney replacement therapy (CKD non-KRT; n = 684). We used principal component analysis to identify symptom clusters per treatment group, and proportional odds models to assess the association between clusters and usual activities. RESULTS: Overall, clusters related to: lack of energy and mobility; gastrointestinal; skin; and mental health. Across groups, the 'lack of energy and mobility' clusters were associated with having problems with usual activities, with odds ratios (OR) ranging between 1.24 (95% confidence interval [CI], 1.21-1.57) for haemodialysis and 1.56 for peritoneal dialysis (95% CI, 1.28-1.90). This association was confirmed longitudinally in haemodialysis (n = 399) and transplant (n = 249) subgroups. IMPLICATIONS: Our findings suggest that healthcare professionals should consider routinely assessing symptoms in the 'lack of energy & mobility' cluster in all people with CKD, regardless of whether they volunteer this information; not addressing these symptoms is likely to be related to them having problems with performing usual activities. Future studies should explore why symptoms within clusters commonly co-occur and how they interrelate. This will inform the development of cluster-level symptom management interventions with enhanced potential to improve outcomes for people with CKD.

How an ordeal becomes the norm: A qualitative exploration of experiences of self-cannulation in male home haemodialysis patients.

OBJECTIVES: Despite home haemodialysis (HHD) being associated with significant health and psychosocial benefits, it remains an under-utilized dialysis modality for people with chronic kidney disease. Self-cannulation, where patients insert their own needles for dialysis, is a key component of HHD. Recent research suggests that the prospect of self-cannulation is a barrier for patients, but there is little research which examines why this is the case. The aim of this study was to explore male HHD patients' experiences and attitudes towards self-cannulation. DESIGN: Qualitative methods were adopted to gather in-depth views from experienced HHD patients from a UK renal centre. METHODS: Semi-structured interviews were conducted with eight male HHD patients (HHD duration: 12-55 months). During the interview, the researcher elicited participants' lived experience of self-cannulation. Topics included the decision to self-cannulate and the impact of self-cannulation on the patient. The data collected were analysed using interpretative phenomenological analysis. RESULTS: The findings from this study elucidate the process of how self-cannulation changed from an ordeal to the norm in these participants' lives. The central theme from these interviews is that 'becoming a person who self-cannulates is a process'. Three super-ordinate themes were discussed that relate to this central theme: 'gaining control', 'building confidence', and 'becoming the norm'. CONCLUSIONS: The findings from this study suggest that some patients' initial fears of self-cannulation can be overcome. These findings offer health care professionals and patients alike a greater understanding of how patients who self-cannulate conceptualize it and its role in their mental and physical health. Statement of contribution What is already known on this subject? Home haemodialysis is a cost-effective form of renal replacement therapy which is under-utilized in the United Kingdom. Home haemodialysis is associated with positive health outcomes. Self-cannulation is noted as a barrier to home haemodialysis. What does this study add? Describes the process by which male dialysis patients became proficient in self-cannulation. Highlights psychological mechanisms which may facilitate and maintain self-cannulation. Suggests practical techniques which can be incorporated into renal clinics and care plans.