Methods for Measuring Multiple Medication Adherence: A Systematic Review-Report of the ISPOR Medication Adherence and Persistence Special Interest Group.

BACKGROUND: A broad literature base exists for measuring medication adherence to monotherapeutic regimens, but publications are less extensive for measuring adherence to multiple medications. OBJECTIVES: To identify and characterize the multiple medication adherence (MMA) methods used in the literature. METHODS: A literature search was conducted using PubMed, PsycINFO, the International Pharmaceutical Abstracts, the Cumulative Index to Nursing and Allied Health Literature and the Cochrane Library databases on methods used to measure MMA published between January 1973 and May 2015. A two-step screening process was used; all abstracts were screened by pairs of researchers independently, followed by a full-text review identifying the method for calculating MMA. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed to conduct this systematic review. For studies that met the eligibility criteria, general study and adherence-specific characteristics and the number and type of MMA measurement methods were summarized. RESULTS: The 147 studies that were included originated from 32 countries, in 13 disease states. Of these studies, 26 used proportion of days covered, 23 used medication possession ratio, and 72 used self-reported questionnaires (e.g., the Morisky Scale) to assess MMA. About 50% of the studies included more than one method for measuring MMA, and different variations of medication possession ratio and proportion of days covered were used for measuring MMA. CONCLUSIONS: There appears to be no standardized method to measure MMA. With an increasing prevalence of polypharmacy, more efforts should be directed toward constructing robust measures suitable to evaluate adherence to complex regimens. Future research to understand the validity and reliability of MMA measures and their effects on objective clinical outcomes is also needed.

Initial Medication Adherence-Review and Recommendations for Good Practices in Outcomes Research: An ISPOR Medication Adherence and Persistence Special Interest Group Report.

BACKGROUND: Positive associations between medication adherence and beneficial outcomes primarily come from studying filling/consumption behaviors after therapy initiation. Few studies have focused on what happens before initiation, the point from prescribing to dispensing of an initial prescription. OBJECTIVE: Our objective was to provide guidance and encourage high-quality research on the relationship between beneficial outcomes and initial medication adherence (IMA), the rate initially prescribed medication is dispensed. METHODS: Using generic adherence terms, an international research panel identified IMA publications from 1966 to 2014. Their data sources were classified as to whether the primary source reflected the perspective of a prescriber, patient, or pharmacist or a combined perspective. Terminology and methodological differences were documented among core (essential elements of presented and unpresented prescribing events and claimed and unclaimed dispensing events regardless of setting), supplemental (refined for accuracy), and contextual (setting-specific) design parameters. Recommendations were made to encourage and guide future research. RESULTS: The 45 IMA studies identified used multiple terms for IMA and operationalized measurements differently. Primary data sources reflecting a prescriber's and pharmacist's perspective potentially misclassified core parameters more often with shorter/nonexistent pre- and postperiods (1-14 days) than did a combined perspective. Only a few studies addressed supplemental issues, and minimal contextual information was provided. CONCLUSIONS: General recommendations are to use IMA as the standard nomenclature, rigorously identify all data sources, and delineate all design parameters. Specific methodological recommendations include providing convincing evidence that initial prescribing and dispensing events are identified, supplemental parameters incorporating perspective and substitution biases are addressed, and contextual parameters are included.

A systematic literature review of psychosocial and behavioral factors associated with initial medication adherence: a report of the ISPOR medication adherence & persistence special interest group.

OBJECTIVES: Numerous factors influencing medication adherence in chronically ill patients are well documented, but the paucity of studies concerning initial treatment course experiences represents a significant knowledge gap. As interventions targeting this crucial first phase can affect long-term adherence and outcomes, an international panel conducted a systematic literature review targeting behavioral or psychosocial risk factors. METHODS: Eligible published articles presenting primary data from 1966 to 2011 were abstracted by independent reviewers through a validated quality instrument, documenting terminology, methodological approaches, and factors associated with initial adherence problems. RESULTS: We identified 865 potentially relevant publications; on full review, 24 met eligibility criteria. The mean Nichol quality score was 47.2 (range 19-74), with excellent reviewer concordance (0.966, P < 0.01). The most prevalent pharmacotherapy terminology was initial, primary, or first-fill adherence. Articles described the following factors commonly associated with initial nonadherence: patient characteristics (n = 16), medication class (n = 12), physical comorbidities (n = 12), pharmacy co-payments or medication costs (n = 12), health beliefs and provider communication (n = 5), and other issues. Few studies reported health system factors, such as pharmacy information, prescribing provider licensure, or nonpatient dynamics. CONCLUSIONS: Several methodological challenges synthesizing the findings were observed. Despite implications for continued medication adherence and clinical outcomes, relatively few articles directly examined issues associated with initial adherence. Notwithstanding this lack of information, many observed factors associated with nonadherence are amenable to potential interventions, establishing a solid foundation for appropriate ongoing behaviors. Besides clarifying definitions and methodology, future research should continue investigating initial prescriptions, treatment barriers, and organizational efforts to promote better long-term adherence.

Experiences of caregivers of people with Parkinson's disease in Singapore: a qualitative analysis.

AIMS AND OBJECTIVES: To conduct an in-depth qualitative examination of the experiences of Singaporean people caring for those with Parkinson's disease (PD). BACKGROUND: The need to provide care for people with PD will increase with the extended life expectancy of Singaporeans. Caring for people with PD in their own homes for as long as possible is argued to provide psychosocial benefits as well as benefiting the community by delayed institutionalisation and reduced healthcare costs. DESIGN: This study reports the qualitative exploratory component of a large mixed method sequential explanatory design. METHODS: Caregivers were selected through a purposive sampling technique and stratified based on the Hoehn and Yahr disease staging. Twenty-one semi-structured interviews were conducted in the home setting. Interviews were audio-taped and transcribed verbatim. The qualitative data were analysed using Ritchie and Spencer's framework method of qualitative analysis (1994, Analyzing Qualitative Data, Routledge, London). RESULTS: Seventeen (81%) caregivers were women, and their ages ranged from 31 years to more than 71 years. The length of the interview ranged from 42-106 minutes. The interview transcriptions produced 1731 free nodes, and after careful scrutiny for redundancy, 11 sub-themes were identified, which were organised into four key themes. These themes pertained to: (1) Coping and adaptation, (2) Challenges of caregiving, (3) Effects of caregiving on the caregivers and the (4) Need for better caregiver support. CONCLUSION: The results of this study have provided insights into the coping and well-being of caregivers of people with PD. The progressive nature of PD placed a significant burden on caregivers' emotional well-being. The findings of this study underscore the need for formal caregiver support and education to reduce strain in caregivers targeted at every stage of PD as there is no clear pattern of disease progression. RELEVANCE TO CLINICAL PRACTICE: This study has provided important findings that will inform the construction of interventional strategies to reduce caregiver burden and the provision of better support services for caregivers.

The devil is in the detail - a multifactorial intervention to reduce blood pressure in co-existing diabetes and chronic kidney disease: a single blind, randomized controlled trial.

BACKGROUND: About 30-60% of individuals are non-adherent to their prescribed medications and this risk increases as the number of prescribed medications increases. This paper outlines the development of a consumer-centred Medicine Self-Management Intervention (MESMI), designed to improve blood pressure control and medication adherence in consumers with diabetes and chronic kidney disease recruited from specialist outpatients' clinics. METHODS: We developed a multifactorial intervention consisting of Self Blood Pressure Monitoring (SBPM), medication review, a twenty-minute interactive Digital Versatile Disc (DVD), and follow-up support telephone calls to help consumers improve their blood pressure control and take their medications as prescribed. The intervention is novel in that it has been developed from analysis of consumer and health professional views, and includes consumer video exemplars in the DVD. The primary outcome measure was a drop of 3-6 mmHg systolic blood pressure at three months after completion of the intervention. Secondary outcome measures included: assessment of medication adherence, medication self-efficacy and general wellbeing. Consumers' adherence to their prescribed medications was measured by manual pill count, self-report of medication adherence, and surrogate biochemical markers of disease control. DISCUSSION: The management of complex health problems is an increasing component of health care practice, and requires interventions that improve patient outcomes. We describe the preparatory work and baseline data of a single blind, randomized controlled trial involving consumers requiring cross-specialty care with a follow-up period extending to 12 months post-baseline. TRIAL REGISTRATION: The trial was registered with the Australian and New Zealand Clinical Trials Register (ACTRN12607000044426).

Parkinson's Disease Caregiver Strain in Singapore.

Background: Caregiver strain is recognized globally with Parkinson's disease (PD). Comparatively little is understood about caregiver burden and strain in Asia. Objective: To investigate caregiver strain for families living with PD in Singapore, in light of international data. Methods: Ninety-four caregivers were recruited via people living with idiopathic PD in Singapore. Caregiver strain was assessed using the Zarit Burden Interview (ZBI); health status was assessing using the Cumulative Illness Rating Scale for Geriatrics (CIRS-G). PD disability measures were the Unified Parkinson's Disease Rating Scale (UPDRS) and modified Hoehn and Yahr (1967) Scale. Results: Primary caregivers of people living with PD in Singapore were mostly cohabiting spouses, partners or offspring. Around half employed foreign domestic helpers. Mean caregiving duration was 5.9 years with an average of eight hours per day spent in caregiving roles. Most care providers were comparatively healthy. Caregivers reported significant levels of strain which increased with greater level of disability (r = 0.36, n = 94, p < 0.001). Associations were significant between caregiver strain and scores on the UPDRS mentation, behavior, and mood subscales [r = 0.46, n = 94, p < 0.001, 95% CI (0.28, 0.60)]. High scores on the UPDRS activities of daily living subscale were associated with caregiver strain [r = 0.50, n = 94, p < 0.001, CI (0.33, 0.64)]. Conclusion: Most caregivers in this Singapore sample reported high levels of strain, despite comparatively good physical function. Caregiver strain in PD spans geopolitical and cultural boundaries and correlates with disease severity. These results support the need for better early recognition, education, and support for caregivers of people living with PD.

Adherence to multiple, prescribed medications in diabetic kidney disease: A qualitative study of consumers' and health professionals' perspectives.

BACKGROUND: Individuals are adherent to approximately 50% of their prescribed medications, which decreases when multiple, chronic conditions are involved. OBJECTIVE: To examine factors affecting adherence to multiple prescribed medications for consumers with co-existing diabetes and chronic kidney disease (diabetic kidney disease) from the time of prescription to the time they took their medications. DESIGN: A descriptive exploratory design was used incorporating in-depth interviews and focus groups. SETTING: The diabetes and nephrology departments of two metropolitan, public hospitals in Melbourne, Australia. PARTICIPANTS: A convenience sample of 23 consumers with diabetic kidney disease participated in an in-depth interview. Inclusion criteria involved English-speaking individuals, aged > or =18 years, with co-existing diabetes and chronic kidney disease, and who were mentally competent. Exclusion criteria included impending commencement on dialysis, pregnancy, an aggressive form of cancer, or a mental syndrome that was not stabilised with medication. Sixteen health professionals working in diabetes and nephrology departments in Melbourne, Australia also participated in one of two focus groups. METHODS: In-depth structured interviews and focus groups were conducted and analysed according to a model of medication adherence. RESULTS: Consumers were not convinced of the need, effectiveness and safety of all of their medications. Alternatively, health professionals focussed on the importance of consumers taking their medications as prescribed and believed that the risk of medication-related adverse effects was over-rated. Accessing prescribed medications and difficulties surrounding continuity of care contributed to consumers' unintentional medication non-adherence. In particular, it was hard for consumers to persist taking their ongoing medication prescriptions. Healthcare system inadequacies were highlighted, which affected relationships between consumers with diabetic kidney disease and health professionals. CONCLUSIONS: Acknowledging the barriers as perceived by consumers with diabetic kidney disease can facilitate effective communication and partnerships with health professionals necessary for medication adherence and medication safety.

Effectiveness of multidisciplinary interventions to improve the quality of life for people with Parkinson's disease: a systematic review.

AIMS: To conduct a systematic review and critically evaluate the literature on the effectiveness of multidisciplinary interventions to improve quality of life for people with Parkinson's disease. METHODS: An electronic search of the following publication databases was performed for records from 1995 to 2011: CINAHL PLUS (EBSCO), Joanna Briggs Institute, Pubmed, Web of Science (ISI), psycINFO, Scopus and Cochrane library. The keywords used were Parkinson's disease, nursing, allied health, doctor, intervention, quality of life, rehabilitation, multidisciplinary team and their various combinations. Key terms were matched to MeSH subject headings and exploded where relevant to include all subheadings and related terms to each key term used. 1808 articles were initially identified based on our selection criteria and the reference list of these articles was hand searched. Nine studies were included after this sifting process and critiqued by two reviewers. RESULTS: Three randomised controlled trials and 6 non-randomised cohort studies were included. For these studies the level of evidence ranged from the Scottish Intercollegiate Network (SIGN) level of 1- to 2-. The outcome measures assessed were heterogeneous, including measures of disability of disease, stage of disease and various quality of life measures. CONCLUSION: The evidence quantifying positive and sustained effects of multidisciplinary interventions to improve quality of life for people with Parkinson's disease is inconclusive. There has been relative lack of controlled experimentation to quantify therapy outcomes. The studies reviewed were varied and lacked long-term follow-up to quantify retention of the intervention. It is recommended that interventions to improve quality of life are tested in randomised controlled trials using standardised outcome measures, adequately powered samples and longer follow-up periods to assess intervention sustainability.

The role of irrational thought in medicine adherence: people with diabetic kidney disease.

AIM: This paper is a report of a study conducted to examine how irrational thinking affects people's adherence to multiple medicines prescribed to manage their diabetic kidney disease. BACKGROUND: Approximately 50% of people are non-adherent to their prescribed medicines and the risk of non-adherence escalates as the number of prescribed medicines increases. Adherence to prescribed medicines can slow disease progression in diabetic kidney disease. METHODS: A descriptive exploratory design was used. In-depth interviews were conducted with 23 participants recruited from a nephrology outpatient clinic in Australia in 2007. Data were analysed using a 'framework' method. FINDINGS: Participants' mean age was 59 years, they had approximately six chronic conditions in addition to their diabetic kidney disease and were prescribed a median of ten medicines daily. Two major themes of irrational thinking--heuristics and denial--and subthemes were identified. Heuristics contributed to inaccurate risk assessment and biases affecting rational judgement concerning medicines, whereas denial was used to enhance coping necessary to manage this complex health condition. CONCLUSION: Participants underestimated their health risks because they had been taking medicines for many years and preferred not to dwell on their ill health. A large amount of irrational thinking was related to maintaining the emotional strength necessary to manage their comorbid conditions as best they could. Regular assessment and support of medicine adherence throughout the disease course is necessary to avert the development of counterproductive heuristics and denial affecting medicine adherence.

The National Open Disclosure Pilot: evaluation of a policy implementation initiative.

OBJECTIVE: To determine which aspects of open disclosure "work" for patients and health care staff, based on an evaluation of the National Open Disclosure Pilot. DESIGN, SETTING AND PARTICIPANTS: Qualitative analysis of semi-structured and open-ended interviews conducted between March and October 2007 with 131 clinical staff and 23 patients and family members who had participated in one or more open disclosure meetings. 21 of 40 pilot hospital sites, in New South Wales, South Australia, Victoria and Queensland, were included in the evaluation. Participating health care staff comprised 49 doctors, 20 nurses, and 62 managerial and support staff. In-depth qualitative data analysis involved mapping of discursive themes and subthemes across the interview transcripts. RESULTS: Interviewees broadly supported open disclosure; they expressed uncertainty about its deployment and consequences, and made detailed suggestions of ways to optimise the experience, including careful pre-planning, participation by senior medical staff, and attentiveness to consumers' experience of the adverse event. CONCLUSION: Despite some uncertainties, the national evaluation indicates strong support for open disclosure from both health care staff and consumers, as well as a need to resource this new practice.