Développement d'un questionnaire mesurant la perception du patient atteint de maladies chroniques de l'habilitation par le médecin de famille
Rationale: Chronic diseases represent an important health burden that often involves major adaptations to manage the disease on a daily basis. Health professionals, such as the family physician, can help a person acquire more power over his or her health (enablement). While it would be useful to measure patient perception of enablement by the family doctor with a valid questionnaire, existing tools present important gaps. Aim and objectives: This study aimed at developing a self-administered questionnaire to measure the perception of patients with chronic diseases of enablement by their family physician. The objectives were: 1) To deepen the conceptualization of enablement by validating the proposed conceptual framework with patients presenting with chronic diseases and to specify the relative importance of its dimensions; 2) To operationalise the dimensions by proposing indicators of these dimensions (pool of items); 3) To verify the content validity of the questionnaire. Methods: An exploratory sequential mixed-method research design was chosen. The descriptive qualitative study (objectives 1 and 2) used in-depth interviews with 30 patients aged 35 to 75 presenting with at least one chronic disease, having the same family doctor for at least one year and recruited through maximum variation sampling. Taped interviews were transcribed and analyzed using Miles and Huberman's mixed coding method (2003a). A three-round e-Delphi study (objective 3) involved 15 Canadian experts in family medicine, able to read in French. The experts scored the items proposed on a 9-point scale (1 = Inappropriate to 9 = Very appropriate) and could suggest rewording and additions. Items scored 7-9 by the experts were considered consensual and were not presented in the following round. Items that were not consensual after the third round were decided upon by the team of researchers. Results: The partnership (the trusting relationship and decisions to be taken) that develops over time was found to be a major component of enablement. The enablement role of the physician goes beyond the medical consultation to defend the interests and safety of the patient's journey through the healthcare system. The trusting relationship combined with a good knowledge of the person may help the family physician better understand and legitimize the various feelings experienced while offering realistic hope . The family physician is in a privileged position to help patients develop their own expertise . Sixty-six items classified into six dimensions were submitted to the experts during the first round of the E-Delphi method. The first round was completed by 13 experts: 21 items were consensual; 25 items were resubmitted without any modification; 16 items were modified and four were rejected. Forty-one items were submitted during the second round, completed by 13 experts: eight items were consensual; 20 items were submitted without any modification; 12 items were modified and one item was rejected. Thirty-three items were submitted during the third round completed by nine experts: 29 items remained intact; three items were modified and one item was rejected. Conclusion: An initial 61-item questionnaire is proposed.