Well, I Wouldn't be Any Worse Off, Would I, Than I am Now? A Qualitative Study of Decision-Making, Hopes, and Realities of Adults With Type 1 Diabetes Undergoing Islet Cell Transplantation.

BACKGROUND: For selected individuals with type 1 diabetes, pancreatic islet transplantation (IT) prevents recurrent severe hypoglycemia and optimizes glycemia, although ongoing systemic immunosuppression is needed. Our aim was to explore candidates and recipients' expectations of transplantation, their experience of being on the waiting list, and (for recipients) the procedure and life posttransplant. METHODS: Cross-sectional qualitative research design using semistructured interviews with 16 adults (8 pretransplant, 8 posttransplant; from 4 UK centers (n = 13) and 1 Canadian center (n = 3)). Interviews were audio-recorded, transcribed, and underwent inductive thematic analysis. RESULTS: Interviewees were aged (mean ± SD) 52 ± 10 years (range, 30-64); duration of diabetes, 36 ± 9 years (range, 21-56); 12 (75%) were women. Narrative accounts centered on expectations, hopes, and realities; decision-making; waiting and uncertainty; the procedure, hospital stay, and follow-up. Expected benefits included fewer severe hypoglycemic episodes, reduced need for insulin, preventing onset/progression of complications and improved psychological well-being. These were realized for most, at least in the short term. Most interviewees described well-informed, shared decision-making with clinicians and family, and managing their expectations. Although life "on the list" could be stressful, and immunosuppressant side effects were severe, interviewees reported "no regrets." Posttransplant, interviewees experienced increased confidence, through freedom from hypoglycemia and regained glycemic control, which tempered any disappointment about continued reliance on insulin. Most viewed their transplant as a success, though several reflected upon setbacks and hidden hopes for becoming "insulin-free." CONCLUSIONS: Independently undertaken interviews demonstrated realistic and balanced expectations of IT and indicate how to optimize the process and support for future IT candidates.

What factors support older people to increase their physical activity levels? An exploratory analysis of the experiences of PACE-Lift trial participants.

BACKGROUND: Physical Activity (PA) has significant health benefits for older adults, but nearly all UK over 60's are not achieving recommended levels. The PACE-Lift primary care-based walking intervention for 60-75 year-olds used a structured, theoretically grounded intervention with pedometers, accelerometers, handbooks and support from practice nurses trained in behaviour change techniques. It demonstrated an objective increase in walking at 3 and 12 months. We investigated the experiences of intervention participants who did (and did not) increase their walking, in order to explore facilitators to increased walking. METHODS: Semi-structured telephone interviews used an interview schedule with a purposive sample of 30 intervention participants, 19 who had objectively increased their walking over the previous year and 11 who had not. Interviews were audio-recorded, transcribed and coded independently by researchers to generate a thematic coding framework. RESULTS: Both groups confirmed that walking was an appropriate PA for people of 'their age'. The majority of those with increased walking participated in the trial as a couple, were positive about individualised goal-setting, developed strategies for maintaining their walking, and had someone to walk with. Non-improvers reported their attempts to increase walking were difficult because of lack of social support and were less positive about the intervention's behaviour change components. DISCUSSION: Walking is an acceptable and appropriate PA intervention for older people. The intervention's goal-setting components were important for those who increased their walking. Mutual support between partners participating as a couple and having someone to walk with also facilitated increased walking.

"It's not just about walking.....it's the practice nurse that makes it work": a qualitative exploration of the views of practice nurses delivering complex physical activity interventions in primary care.

BACKGROUND: Physical activity (PA) is important for physical and mental health in adults and older adults. Interventions incorporating theory-based behaviour change techniques (BCTs) can be useful in helping people to increase their PA levels and can be delivered by practice nurses in primary care. We undertook two primary care based complex walking interventions among adults and older adults. Both interventions were underpinned by BCTs and delivered by practice nurses and we sought their views and experiences of delivering over 1400 complex PA consultations. METHODS: Semi structured interviews with two practice nurse groups (n = 4 and n = 5) and two individual interviews (total n = 11) were conducted by independent facilitators; audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Five key themes emerged as enablers and/or barriers to delivering the intervention: preparation and training; initial and ongoing support; adherence to the protocol; the use of materials and equipment; and engagement of participants. The themes were organised into a framework of 'pre-trial' and 'delivery of the intervention'. Two additional 'post-trial' themes were identified; changed practice and the future feasibility of the intervention. Nurses believed that taking part in the trial, especially the BCT training, enhanced the quality and delivery of advice and support they provided within routine consultations, although the lack of time available routinely makes this challenging. CONCLUSION: Delivering an effective behaviour change intervention in primary care requires adequate training and support for practice nurses both initially and throughout the trial as well as adequate consultation time. Enhanced skills from participating in such trials can lead to long-term changes, including more patient-centred consulting. TRIAL REGISTRATION: PACE-Lift ISRCTN 42122561 , PACE-UP ISRCTN 98538934 .

A primary care nurse-delivered walking intervention in older adults: PACE (pedometer accelerometer consultation evaluation)-Lift cluster randomised controlled trial.

BACKGROUND: Brisk walking in older people can increase step-counts and moderate to vigorous intensity physical activity (MVPA) in ≥10-minute bouts, as advised in World Health Organization guidelines. Previous interventions have reported step-count increases, but not change in objectively measured MVPA in older people. We assessed whether a primary care nurse-delivered complex intervention increased objectively measured step-counts and MVPA. METHODS AND FINDINGS: A total of 988 60-75 year olds, able to increase walking and randomly selected from three UK family practices, were invited to participate in a parallel two-arm cluster randomised trial; randomisation was by household. Two-hundred-ninety-eight people from 250 households were randomised between 2011 and 2012; 150 individuals to the intervention group, 148 to the usual care control group. Intervention participants received four primary care nurse physical activity (PA) consultations over 3 months, incorporating behaviour change techniques, pedometer step-count and accelerometer PA intensity feedback, and an individual PA diary and plan. Assessors were not blinded to group status, but statistical analyses were conducted blind. The primary outcome was change in accelerometry assessed average daily step-counts between baseline and 3 months, with change at 12 months a secondary outcome. Other secondary outcomes were change from baseline in time in MVPA weekly in ≥10-minute bouts, accelerometer counts, and counts/minute at 3 months and 12 months. Other outcomes were adverse events, anthropometric measures, mood, and pain. Qualitative evaluations of intervention participants and practice nurses assessed the intervention's acceptability. At 3 months, eight participants had withdrawn or were lost to follow-up, 280 (94%) individuals provided primary outcome data. At 3 months changes in both average daily step-counts and weekly MVPA in ≥10-minute bouts were significantly higher in the intervention than control group: by 1,037 (95% CI 513-1,560) steps/day and 63 (95% CI 40-87) minutes/week, respectively. At 12 months corresponding differences were 609 (95% CI 104-1,115) steps/day and 40 (95% CI 17-63) minutes/week. Counts and counts/minute showed similar effects to steps and MVPA. Adverse events, anthropometry, mood, and pain were similar in the two groups. Participants and practice nurses found the intervention acceptable and enjoyable. CONCLUSIONS: The PACE-Lift trial increased both step-counts and objectively measured MVPA in ≥10-minute bouts in 60-75 year olds at 3 and 12 months, with no effect on adverse events. To our knowledge, this is the first trial in this age group to demonstrate objective MVPA increases and highlights the value of individualised support incorporating objective PA assessment in a primary care setting. TRIAL REGISTRATION: Controlled-Trials.com ISRCTN42122561.

Which older people decline participation in a primary care trial of physical activity and why: insights from a mixed methods approach.

BACKGROUND: Physical activity is of vital importance to older peoples' health. Physical activity intervention studies with older people often have low recruitment, yet little is known about non-participants. METHODS: Patients aged 60-74 years from three UK general practices were invited to participate in a nurse-supported pedometer-based walking intervention. Demographic characteristics of 298 participants and 690 non-participants were compared. Health status and physical activity of 298 participants and 183 non-participants who completed a survey were compared using age, sex adjusted odds ratios (OR) (95% confidence intervals). 15 non-participants were interviewed to explore perceived barriers to participation. RESULTS: Recruitment was 30% (298/988). Participants were more likely than non-participants to be female (54% v 47%; p = 0.04) and to live in affluent postcodes (73% v 62% in top quintile; p < 0.001). Participants were more likely than non-participants who completed the survey to have an occupational pension OR 2.06 (1.35-3.13), a limiting longstanding illness OR 1.72 (1.05-2.79) and less likely to report being active OR 0.55 (0.33-0.93) or walking fast OR 0.56 (0.37-0.84). Interviewees supported general practice-based physical activity studies, particularly walking, but barriers to participation included: already sufficiently active, reluctance to walk alone or at night, physical symptoms, depression, time constraints, trial equipment and duration. CONCLUSION: Gender and deprivation differences suggest some selection bias. However, trial participants reported more health problems and lower activity than non-participants who completed the survey, suggesting appropriate trial selection in a general practice population. Non-participant interviewees indicated that shorter interventions, addressing physical symptoms and promoting confidence in pursuing physical activity, might increase trial recruitment and uptake of practice-based physical activity endeavours.

Randomised controlled trial of a complex intervention by primary care nurses to increase walking in patients aged 60-74 years: protocol of the PACE-Lift (Pedometer Accelerometer Consultation Evaluation - Lift) trial.

BACKGROUND: Physical activity is essential for older peoples' physical and mental health and for maintaining independence. Guidelines recommend at least 150 minutes weekly, of at least moderate intensity physical activity, with activity on most days. Older people's most common physical activity is walking, light intensity if strolling, moderate if brisker. Less than 20% of United Kingdom 65-74 year olds report achieving the guidelines, despite most being able to. Effective behaviour change techniques include strategies such as goal setting, self-monitoring, building self-efficacy and relapse prevention. Primary care physical activity consultations allow individual tailoring of advice. Pedometers measure step-counts and accelerometers measure physical activity intensity. This protocol describes an innovative intervention to increase walking in older people, incorporating pedometer and accelerometer feedback within a primary care nurse physical activity consultation, using behaviour change techniques. DESIGN: Randomised controlled trial with intervention and control (usual care) arms plus process and qualitative evaluations. PARTICIPANTS: 300 people aged 60-74 years registered with 3 general practices within Oxfordshire and Berkshire West primary care trusts, able to walk outside and with no restrictions to increasing their physical activity. INTERVENTION: 3 month pedometer and accelerometer based intervention supported by practice nurse physical activity consultations. Four consultations based on behaviour change techniques, physical activity diary, pedometer average daily steps and accelerometer feedback on physical activity intensity. Individual physical activity plans based on increasing walking and other existing physical activity will be produced. OUTCOMES: Change in average daily steps (primary outcome) and average time spent in at least moderate intensity physical activity weekly (secondary outcome) at 3 months and 12 months, assessed by accelerometry. Other outcomes include quality of life, mood, exercise self-efficacy, injuries. Qualitative evaluations will explore reasons for trial non-participation, the intervention's acceptability to patients and nurses and factors enhancing or acting as barriers for older people in increasing their physical activity levels. DISCUSSION: The PACE-Lift trial will determine the feasibility and efficacy of an intervention for increasing physical activity among older primary care patients. Steps taken to minimise bias and the challenges anticipated will be discussed. Word count 341. TRIAL REGISTRATION NUMBER: ISRCTN42122561.

Quantitative evidence for the benefits of Moving the Goalposts, a Sport for Development project in rural Kenya.

Sport for Development has many reported benefits, but quantitative evidence of the impact of these interventions in Low Income Countries remains sparse. A new monitoring and evaluation toolkit was used in a cross-sectional survey at Moving the Goalposts (MTG), a football project aiming to empower young Kenyan women. We wished to determine empirically whether increased membership duration brought increased benefits. MTG selected and translated toolkit items consistent with the organisation's strategic aims. We collected 333 completed questionnaires at 15 sites. Psychometric validation revealed some reliable scales; remaining items were scored separately. Scores were sensitive to differences between members defined by sociodemographic and site characteristics. Bivariate and multiple regression analyses showed that increased membership duration brought increasing benefits across several domains (perceived lifeskills; social life; insights about HIV/AIDS; outcomes related to female empowerment). Improved leadership skills were mainly age-related. Members attending more established sites experienced greater benefits, but members at more and less accessible sites benefitted similarly. Positive thoughts and feelings were related not to membership duration, but to how long a site had been operating. This indicates the importance of creating a positive culture over time. This cross-sectional study provides quantitative evidence for the benefits of Sport for Development initiatives.

Design and validation of the Satisfaction With Immunisation Service Questionnaire (SWISQ).

Adverse experiences with child immunisation services can contribute to the deferral of immunisation appointments and to non-attendance. The aim of this study was to design and validate the Satisfaction With Immunisation Service Questionnaire (SWISQ) as a tool that can be used by general practices to evaluate their service and identify areas of dissatisfaction. The 19-item SWISQ was derived from past literature and qualitative interviews. Readability statistics, pilot testing and respondent feedback provided evidence of acceptability. The SWISQ was completed by 103 parents attending for their child's or children's vaccinations at four practices in southern England. The measure demonstrated excellent psychometric properties. Principal components analysis identified three subscales (Organisation/interface with practice (alpha 0.74); Consultation experience (0.94); Listening/respecting decisions (0.87)) and an Overall satisfaction scale (0.94). Overall satisfaction was unrelated to parents' age, gender or questionnaire response mode. However, satisfaction with waiting times differed between practices. The SWISQ is a reliable and valid tool that can be used easily within the context of general practice. Further validation is needed to examine re-test reliability, construct and criterion validity, as well as some minor modifications in item content and wording.

The Immunisation Beliefs and Intentions Measure (IBIM): predicting parents' intentions to immunise preschool children.

In England, uptake of the second dose of MMR (against measles, mumps, rubella), and dTaP/IPV or DTaP/IPV booster (against diphtheria, tetanus, pertussis, polio), is lower than that of the primary course. The Immunisation Beliefs and Intentions Measure (IBIM), based on the theory of planned behaviour (TPB) and qualitative interviews, was used to predict parents' intentions to take preschoolers for these recommended vaccinations. Parents from 43 child groups in southern England were randomised to receiving questions about either MMR (N=193) or dTaP/IPV (N=159). Overall, 255 parents fully completed TPB-based items. Regression analyses revealed that parental attitudes about the protective benefits of immunising and perceived behavioural control were strong, reliable predictors of intention to immunise with MMR. For dTaP/IPV, perceived protective benefits and number of children reliably predicted intention to immunise. Differences between parents with 'maximum immunisation intentions' and those with 'less than maximum intentions' are described. The IBIM appears to be a useful measure for predicting parents' intentions to immunise preschoolers. Implications for improving uptake are discussed.

Returning back pain patients to work: how private musculoskeletal practitioners outside the national health service perceive their role (an interview study).

BACKGROUND: Private musculoskeletal practitioners treat a large section of people with back pain, and could play an important role in returning and maintaining patients to work. METHOD: We conducted a qualitative study to explore the self-perceived role of such practitioners in the UK. We interviewed 44 practitioners, including chiropractors, osteopaths and physiotherapists. RESULTS: Thematic analysis of the interview transcripts indicated that return to work is a high priority for patients, many of whom are self-employed. Although in general work was perceived as beneficial to health, practitioners perceived work as a threat for some of their back pain patients. They perceived their role as giving ergonomic, postural and exercise based advice, but were more reluctant to address psychosocial problems related to back pain. A common view was that patients' reluctance to take a break from work impacted badly on their condition, and many practitioners advocated a short time off work duties to focus on rehabilitation. Contact with employers was very limited, and determined by the patients' request. CONCLUSION: In summary, the study identifies several areas in which further education could expand the role of musculoskeletal practitioners and benefit their back pain patients. However, further study is required to determine whether these results are generalisable beyond the limits of this qualitative study UK based study.

Fermented milk containing Bifidobacterium lactis DN-173 010 improved self-reported digestive comfort amongst a general population of adults. A randomized, open-label, controlled, pilot study.

AIM: Some probiotics improve digestive comfort of people with Irritable Bowel Syndrome, but this needs confirmation in a healthy population. The objective of this pilot study was to investigate the effect of consuming fermented milk containing the probiotics Bifidobacterium lactis DN-173010 and yoghourt strains (test product) on digestive comfort and symptoms amongst adults without diagnosed gastrointestinal disorders. METHODS: The study was designed to approximate a real-life situation, by using a branded product in the intervention groups. In an open-label, randomized, controlled trial, 371 adults reporting digestive discomfort were randomized into three groups who had a daily consumption of either one or two pots of test product over 2 weeks, or to follow their usual diet. Digestive comfort and bother from digestive symptoms were assessed by questionnaire at baseline and follow-up (per protocol population n = 360). Self-reported change in digestive comfort and computed change between baseline and follow-up for each of 20 items were compared between groups (Cochran-Mantel-Haenszel test). RESULTS: A higher percentage of participants consuming the test product reported improved digestive comfort (1-pot group 82.5%; 2-pot group 84.3%), than controls (2.9%). Their self-reported change scores differed significantly (P < 0.001). For both test product groups, almost all symptom scores improved significantly more than controls (P < 0.001). There were no significant differences between 1-pot and 2-pot groups. CONCLUSIONS: This pilot study shows that daily consumption of a probiotic food in real-life conditions may be useful in improving digestive comfort and symptom experience of adults from general population. Further double-blind randomized controlled studies are required to confirm these health benefits.

The MacDQoL individualized measure of the impact of macular degeneration on quality of life: reliability and responsiveness.

PURPOSE: To investigate the MacDQoL test-retest reliability and sensitivity to change in vision over a period of one year in a sample of patients with age-related macular degeneration (AMD). DESIGN: A prospective, observational study. METHOD: Patients with AMD from an ophthalmologist's list (n = 135) completed the MacDQoL questionnaire by telephone interview and underwent a vision assessment on two occasions, one year apart. RESULTS: Among participants whose vision was stable over one year (n = 87), MacDQoL scores at baseline and follow-up were highly correlated (r = 0.95; P < .0001). Twelve of the 22 scale items had intraclass correlations of >.80; only two were correlated <.7. There was no difference between baseline and follow-up scores (P = .85), indicating excellent test-retest reliability. Poorer quality of life (QoL) at follow-up, measured by the MacDQoL present QoL overview item, was associated with deterioration in both the better eye and binocular distance visual acuity [VA] (r = 0.29; P = .001, r = 0.21; P = .016, respectively; n = 135). There was a positive correlation between deterioration in the MacDQoL average weighted impact score and deterioration in both binocular near VA and reading speed (r = 0.20; P = .019, r = 0.18; P = .041, respectively; n = 135). CONCLUSION: The MacDQoL has excellent test-retest reliability. Its sensitivity to change in vision status was demonstrated in correlational analyses. The measure indicates that the negative impact of AMD on QoL increases with increasing severity of visual impairment.

'It's just the normal thing to do': exploring parental decision-making about the 'five-in-one' vaccine.

This qualitative study explored parental decision-making about the DTaP/IPV/Hib 'five-in-one' vaccine. Semi-structured interviews were conducted with 22 parents of babies aged between 4 and 13 weeks old, recruited from four practices in southern England. A modified Grounded Theory approach identified that although parents had some concerns, most complied with the recommended programme rather than making an informed decision. Other themes related to perceived importance of immunisation; beliefs about how immunisation works; trust; perceptions of vulnerability; feelings of guilt and responsibility; and practicalities. It is important to explore how parents' attitudes change over the preschool years and to develop ways of addressing uncertainties about immunisation, including the safety of combining antigens and the need for boosters.

Validation of the revised 10-item HIV Treatment Satisfaction Questionnaire status version and new change version.

OBJECTIVES: Previous validation of the HIV Treatment Satisfaction Questionnaire status version (HIVTSQs) found that nine of the 10 items performed well, but the demands item needed revision. This study investigated the psychometric properties of the revised HIVTSQs and new change version (HIVTSQc). METHODS: English-speaking Americans completed the HIVTSQs at baseline and Week 48 of a clinical trial of HIV treatments, and the HIVTSQc at Week 48. Demographic and viral load information was collected. Psychometric validation used item frequency distributions, Confirmatory Factor Analysis (CFA), item-total correlations, Cronbach's alpha, Spearman's rank correlation, Kruskal-Wallis and Mann-Whitney tests. RESULTS: At baseline, 126 of the 152 patients completed the HIVTSQs fully (100 of 106 at Week 48). The negatively skewed distribution of the revised demands item resembled that of the other nine, with comparable missing data. CFA (baseline and Week 48) supported the general satisfaction/clinical subscale (alpha 0.83; 0.85), lifestyle/ease subscale including demands (alpha 0.82; 0.85), and 10-item treatment satisfaction scale (alpha 0.89; 0.91). Subscale and scale scores differed significantly between ethnic groups. Viral load was not significantly related to subscale or scale scores. At Week 48, 97 of 106 patients completed the HIVTSQc fully. All items had negatively skewed distributions. CFA supported two subscales (general satisfaction/clinical change alpha 0.85; lifestyle/ease change alpha 0.88) and 10-item treatment satisfaction change scale (alpha 0.92). Viral load change between baseline and Week 48 correlated significantly with patients' perceptions of change in HIV control (control(c) item), but not with scale or subscale scores. CONCLUSION: The excellent psychometric properties of the HIVTSQs and HIVTSQc support their use in clinical trials.

Factors underlying suboptimal childhood immunisation.

This review considers possible reasons behind parents' missed vaccination opportunities in the context of the latest immunisation coverage rates for England. Suboptimal uptake is not exclusive to measles, mumps and rubella (MMR). A substantial proportion of children also miss diphtheria, tetanus and polio vaccination. For MMR and diphtheria, tetanus and polio, uptake of primary plus booster immunisation is lower than for the primary course alone. Several reasons for suboptimal uptake are identified from the international literature. These provide insights into parental decision-making and potential barriers to immunisation that may need to be addressed in efforts to improve coverage rates.

+Psychometric evaluation of the MacDQoL individualised measure of the impact of macular degeneration on quality of life.

BACKGROUND: The MacDQoL is an individualised measure of the impact of macular degeneration (MD) on quality of life (QoL). There is preliminary evidence of its psychometric properties and sensitivity to severity of MD. The aim of this study was to carry out further psychometric evaluation with a larger sample and investigate the measure's sensitivity to MD severity. METHODS: Patients with MD (n = 156: 99 women, 57 men, mean age 79 +/- 13 years), recruited from eye clinics (one NHS, one private) completed the MacDQoL by telephone interview and later underwent a clinic vision assessment including near and distance visual acuity (VA), comfortable near VA, contrast sensitivity, colour recognition, recovery from glare and presence or absence of distortion or scotoma in the central 10 degrees of the visual field. RESULTS: The completion rate for the MacDQoL items was 99.8%. Of the 26 items, three were dropped from the measure due to redundancy. A fourth was retained in the questionnaire but excluded when computing the scale score. Principal components analysis and Cronbach's alpha (0.944) supported combining the remaining 22 items in a single scale. Lower MacDQoL scores, indicating more negative impact of MD on QoL, were associated with poorer distance VA (better eye r = -0.431 p < 0.001; worse eye r = -0.350 p < 0.001; binocular vision r = -0.419 p < 0.001) and near VA (better eye r = -0.326 p < 0.001; worse eye r = -0.226 p < 0.001; binocular vision r = -0.326 p < 0.001). Poorer MacDQoL scores were associated with poorer contrast sensitivity (better eye r = 0.392 p < 0.001; binocular vision r = 0.423 p < 0.001), poorer colour recognition (r = 0.417 p < 0.001) and poorer comfortable near VA (r = -0.283, p < 0.001). The MacDQoL differentiated between those with and without binocular scotoma (U = 1244 p < 0.001). CONCLUSION: The MacDQoL 22-item scale has excellent internal consistency reliability and a single-factor structure. The measure is acceptable to respondents and the generic QoL item, MD-specific QoL item and average weighted impact score are related to several measures of vision. The MacDQoL demonstrates that MD has considerable negative impact on many aspects of QoL, particularly independence, leisure activities, dealing with personal affairs and mobility. The measure may be valuable for use in clinical trials and routine clinical care.

The influence of diabetic retinopathy on quality of life: interviews to guide the design of a condition-specific, individualised questionnaire: the RetDQoL.

An individualised measure of the impact of diabetic retinopathy on quality of life (QoL) was developed, using a four-phase iterative approach, incorporating qualitative and quantitative methods. In semi-structured interviews, eleven people with diabetic retinopathy in each of two UK and two German hospitals described how QoL would be different without diabetic retinopathy. They completed and commented on the latest Retinopathy Dependent QoL (RetDQoL) draft. Interviews were content analysed before questionnaire revision and translation for the next centre. Twenty-six men and 18 women were interviewed: median age 60.5 (28-82) years; severity ranged from untreated background diabetic retinopathy to proliferative diabetic retinopathy requiring photocoagulation in both eyes, and vitrectomy. The resulting 26-domain RetDQoL asks about the impact of 'diabetic eye problems'. Iterative methodology ensured good understanding, face and content validity. It can be self- or interviewer-completed. Visual impairment, worries and movement restrictions impaired many aspects of QoL, with impacts before vision loss. Practice implications relate to using the RetDQoL and improving practitioner-patient communication.