The requirement to respect autonomy - The Royal New Zealand ...

ORIGINAL SCIENTIFIC PAPErSquantitative researchtive (very little, never, not very well) scoring atthe high end. While there was no evidence thatconfusion occurred in this study, discussion withparticipants suggests that individuals prefer ratingfrom negative (low) to positive (high scores).The PACIC scale is useful in assessing theperceived quality of care provided. PACIC hasbeen developed from ACIC (Assessment ofChronic Illness Care), an instrument used toenable clinicians and health care teams to assessthe extent to which the care they provide alignswith ‘best practice’ chronic care management. 12By using similar domains, the PACIC enables anassessment of the quality of care being deliveredfrom the patient’s perspective. This study diddemonstrate that the Flinders Program TM showeda perceived improvement in the overall quality ofcare and, in particular, evidence-based elementsof chronic care management (CCM) such as goalsetting, problem solving and follow-up.The self-efficacy scale provided a useful measureof self-reported confidence in managing chronicdisease. The small sample size can account for thefinding that the intervention group showed deteriorationon their overall self-reported confidence(self-efficacy). A further explanation may be thatwith the improved opportunity to understandtheir condition and treatment through participationin the Flinders Program TM there is a diminishedconfidence seen at six months. Improvingpatient confidence requires ongoing support overa time frame longer than six months and a longerstudy would be needed to determine this.A failure to demonstrate difference within andbetween the ‘control’ and ‘intervention’ groupscan partially be attributed to the extensive baselineand follow-up data collection process whichin itself proved to be an intervention. Completionof the data collection form required approximatelyone hour and, for both groups of patients, thisprovided an opportunity to reflect on their illnessand the effect this may have on their lives.Secondary outcome measuresThe secondary outcome measures collected, butnot reported in this paper, meant that data collectionwas onerous for patients. These measuresadded no value. Clinical outcome measures wouldonly be of value in a study of adequate length.General practice recruitmentThe short time frame for completion and thecomplexity of the general practice environmenthighlights the difficulties with undertakingstudies in primary care with patients who havelong-term conditions. Difficulties with practiceworkloads, staff changes and competing nursedemands resulted in only seven interventionpractices completing study requirements withinthe nine-month time frame of the study. Controlpractices were also difficult to recruit, as manypractices were reluctant to participate in a studywhere the perceived patient care of the chroni-Completion of the data collection formrequired approximately one hour and, forboth groups of patients, this provided anopportunity to reflect on their illness andthe effect this may have on their livescally ill may be shown to be of ‘lesser’ qualitythan in the intervention practices. This resultedin the control general practices who ‘volunteered’to participate in the study being those practiceswhere chronic care programmes were established.Patients in the control practices, while notcompleting a Flinders assessment, may have beenlinked into goal setting and care planning as supportfor management of their condition.Patient recruitmentHigh-needs patients with long-term conditionsare frequently a mobile population, and inaccurateaddresses and phone numbers combinedwith difficulties with the accuracy of diseasecoding in practice management systems resultedin over 300 patients being contacted to recruit asample of 100. Likewise, follow-up at six monthswas challenging with many unknown addresses.Data completion required participants to completeVOLUME 2 • NUMBER 4 • DECEMBER 2010 J OURNAL OF PRIMARY HEALTH CARE 301