1 DEVELOPMENT OF A DIALYSIS PATIENT SATISFACTION QUESTIONNAIRE Phi Linh NGUYEN THI 1, Serge BRIANCON 1, Luc FRIMAT 2, (1) Epidemiologie et Evaluation Cliniques EA 3444, Inserm - CHU, Nancy, France (2) Nephrology, CHU, Vandoeuvre, France

2Background  Patients play a key role in the rapid change of health system, thus it is essential to understand better their attitudes, beliefs, behaviours, concerns and expectations.  Health care providers who wish to fulfil patients needs have shown growing interest in the use of patient evaluations and reports as a complement to other methods of quality assessment and assurance.

3  Recently much attention has been paid to the assessment of patient satisfaction with care. Patients satisfaction measure has become one of the indicators of heath care evaluation for improving quality of care. In France nowadays it is mandatory for health care structures.  Health care delivery for chronic renal failure in France is an important stake for public health policy: about 600 patients per million habitants are concerned and increases 8% per year.  At this moment, there isn't yet an instrument for measuring satisfaction with care provided to the dialysis patients in France.

4 To develop and evaluate the psychometric properties of a dialysis satisfaction questionnaire in French language. Objective

5 Questionnaire development process - Epidemiologists, nephrologists, - Dialysis patients, patient association (AIR Lorraine), - Region health insurance (CRAM Lorraine). Group of project Literature review* = items banking based on 1. CHOICE satisfaction questionnaire (23 items) 2. Dialysis Patient Questionnaire (Part 2 – Part 6 : 40 items) 3. Satisfaction of Patients in Chronic Dialysis (SEQUS®) (53 items)

6 Group of project Epidemiologists, nephrologists, dialysis patients, patients association, region health insurance Translation and adaptation to French context Step 1 Translation two independent translators Item selection Removal of redundant items Cultural adaptation Nephrologists Content validity Face validity

7  The tool was adapted to the French setting as follows : (1) 38 items dealt with aspects of the dialysis patient experience (2) 3 overall satisfaction items (3) 1 open-ended item.  Items were rated on a 5-point Likert scale : poor, fair, good, very good, excellent or not applicable.

8 Validation of the adapted questionnaire: Psychometric properties estimation Step 2 Sample The sample consisted of all 969 adult prevalent patients treated in the 12 dialysis structures of Lorraine region on February 1st, Study period : February and March of 2004

9  Patients were mailed an envelope containing a questionnaire, a post-paid return envelope and a letter presenting the study with an anonymity and confidentiality guarantee.  Follow-up procedure is done by letter Procedure data collection Data concerning sociodemographic, health, and structure characteristics were obtained from the “Network of Epidemiology and Information in Nephrology" (REIN Registry). REIN Registry - NEPHROLOR

10Results  447 questionnaires were returned and analyzed  Response Rate = 44,3%  Non-respondents were more likely to be women, to live in areas around hospital, to have diabetes and to have a low blood level of hemoglobin.  Response rate varied according to centers of dialysis.

11  Mean age of subjects was 65.9 years, 60.3% were men and 63.3% were retired. 35.3% of patients lived in resident areas around hospitals.  Mean length of dialysis was 4.5 years; 86,8% of patients underwent hemodialysis.  25,9% of patients had diabetes; 57% had cardiovascular diseases.  Mean hemoglobin level was 11.3 g/l. Sample description

12 Questionnaire completion  39.7% respondents needed help to response, in which 85.5% were family member.  50% of respondents gave their consent for transmission of the questionnaire responses to their nephrologists, in which 52% were nominated.  21.6% of respondents made comments and/or suggestions about their dialysis care.  Item response varied from 70% to 93.5% (but 4 items : 17, 21, 25, 38).

13 Dimension of satisfaction Dimension of satisfaction based on :  Results of component principal analysis  Taking into account the item theoretical contributions  Judgement of the experts (professional).  8 dimensions : 7 specifics and overall satisfaction Correlation coefficients between :  7 specific dimensions ranged from.51 to.75  6 specific dimensions and overall satisfaction dimension ranged from.43 to.62.

14 19,1 18,7 16,9 21,6 18,8 18,0 SD 72,1 62,4 57,1 53,9 54,9 61,2 61,6 74,1 Average Scores 0,92 0,91 0,92 0,91 0,93 Cronbach’s α N Dimensions 8,3; 100 0; ,8; 100 2,8; 100 0; 100 7,1; 100 Min;Max 427Paramedical care 427Accessibility 420Local and environment 305 Relation between nephrologists and GP 402Information 419Medical problems management 425Health care organization 439Overall satisfaction (446) Cronbach’s Alpha was 0.93

15  Older patients tended to be more satisfied than younger.  Peritoneal dialysis patients tended to be more satisfied than hemodialysis patients (80.9 vs 73.3).  Patients who participated equally with medical team for selecting their treatment tended to be more satisfied than those who did not participate or those having chosen alone their treatment (77.9 vs 72.0 or 71.0).  Patients who wished to keep anonymity tended to less satisfied than those who accepted give their name (72.9 vs 79.9).  Patients who made comments and/or suggestions about their dialysis care tended to less satisfied than the others (69.3 vs 75.4).

16  Mean scores significantly varied according to medical team for dimensions : health care organization, medical problems management, information, relation between nephrologists and GP. One example concerning the “medical problems management ” dimension for each medical teams is shown below. The variation of the satisfaction scores from one medical team to another was significant (p=0.008), with a difference of 19.7 points between highest and lowest scores.  No variability was observed according to the structure.

17 Adjusted for sex, age, professional activity, agreement for transmission to the nephrologists, presence of comments or suggestion in the questionnaire and dialysis method.

18Conclusions The French version has a satisfying psychometric validity. The French version has a satisfying psychometric validity. This tool highlighted a difference in satisfaction concerning the types of dialysis and the medical teams

19 References : 1. CHOICE satisfaction questionnaire (23 items) Patient’s view of dialysis care. Haya R.Rubin et al AJKD, (6): Dialysis Patient Questionnaire (Part 2 – Part 6 : 40 items) United States Renal Data System (U.S.R.D.S.) 3. Satisfaction of Patients in Chronic Dialysis (SEQUS®) (53 items) Wasserfallen JB. et al. Genève