Modeling specialty medicine access: Understanding key health system processes and players.

OBJECTIVES: To map the specialty medicine process from prescription writing to the patient obtaining medication, identify perceived barriers to access, and highlight potential opportunities for improved efficiency as understood from the perspective of 3 key stakeholder groups: specialty disease clinicians, staff members, and specialty pharmacists. DESIGN: Qualitative research study using semi-structured individual interviews. SETTING AND PARTICIPANTS: Interviews were conducted at a single large tertiary care center targeting clinicians and staff in the hepatitis C, oncology, cystic fibrosis, multiple sclerosis, and rheumatoid arthritis clinics. The second set of participants was pharmacists and technicians at specialty community pharmacies within one large retail chain that was not directly affiliated with the health system. RESULTS: Four conceptual models of specialty medicine access were described by participants. These models varied by disease state, available human resources, and medication. Clinics and specialty pharmacies were not fully aware of the others' systems and contributions to the specialty medicine access process. Perceptions of inefficient communication resulted in frustration and higher perceived work burden. CONCLUSION: There is not a single streamlined pathway for clinics and patients to access specialty medicines in health systems that do not own their own specialty pharmacies. The current system architecture can lead to duplicative work, challenges in communication, and other inefficiencies. Future interventions should focus on streamlining communications between specialty pharmacies, clinics, manufacturers, and payors to create the most efficient access to specialty medicines.

Burden of Illness of Diabetic Peripheral Neuropathic Pain: A Qualitative Study.

INTRODUCTION: Diabetic peripheral neuropathy (DPN) is the result of nerve damage in the toes, feet, or hands, causing loss of feeling or pain for up to 50% of patients. The purpose of this qualitative study was to assess the burden and impact of DPN pain (DPNP) symptoms on patient's functioning and well-being. METHODS: Four focus groups and 47 telephone interviews were conducted to understand the experience and impacts of DPNP from the patient's perspective. All participants were over the age of 18 years, read/spoke English, had a documented diagnosis of DPNP with symptoms for 6 months and a minimum 12-month history of diabetes mellitus, and had a daily pain rating of at least 4 on an 11-point numerical rating scale. Interview transcripts were analyzed thematically based on modified grounded theory principles. RESULTS: There were 70 respondents--48 (68.6%) males and 22 (31.4%) females. The mean age was 54.0 years (range 26-70), and nearly all respondents had type 2 diabetes (87%). Analysis identified four major areas of impact; DPNP patients reported difficulties with: (1) physical function, i.e. walking, exercise, energy, standing, balance, bending, and mobility; (2) daily life, i.e. productivity, recreational activities, work, enjoyment, focus, and chores; (3) social/psychological, i.e. anxiety, friends/family, irritability, depression, and fear; and (4) sleep, i.e. sleep, falling asleep, waking in the night, returning to sleep, and not feeling rested upon awakening. CONCLUSION: DPNP is a significant complication of diabetes with multiple impacts for patient functioning and well-being, which increase the burden of disease.

Impact of adult growth hormone deficiency on daily functioning and well-being.

BACKGROUND: Adult Growth Hormone Deficiency (AGHD) is a debilitating condition resulting from tumors, pituitary surgery, radiation of the head, head injury, or hypothalamic-pituitary disease. This qualitative study was conducted to better understand the multi-faceted impacts and treatment effects of GHD on adult patients' daily lives.Seven focus groups and four telephone interviews were conducted in three countries. Eligible AGHD patients were age 22 or older who had started and stopped growth hormone treatment at least once as an adult. Transcripts were analyzed thematically. RESULTS: Thirty-nine patients were interviewed; majority etiology was pituitary disease or tumor (62%). Thirty-four patients (87%) were currently on growth hormone replacement therapy; therapy initiation mean age was 43 years. Analysis identified five domains of disease impact: 1) Psychological Health--changed body or self-image and negative emotional impacts; 2) Physical Health--problems with sleep/fatigue, sex drive, weight gain, hair, skin, muscle/bone loss; 3) Cognition--concentration or memory trouble; 4) Energy Loss and its negative impacts (productivity, exercise, chores, socialization, or motivation); and 5) Treatment Effect--treatment enhances quality of life, enabling patients to increase effort (exercise, chores, or work improvements). Energy and sleep are improved. Saturation of themes was reached after the sixth focus group. A conceptual model of GHD disease impacts was developed. CONCLUSIONS: Untreated AGHD has significant negative impacts for patients, which treatment often improves. It is important for clinicians and researchers to understand these multiple impacts so that they can address them in individualized treatment plans and incorporate them when assessing treatment outcomes.

Insulin administration and the impacts of forgetting a dose.

PURPOSE: Little is known about unintentional non-adherence associated with forgetting insulin injections and dose amounts. The study objective was to qualitatively examine unintentional insulin dosing and injection irregularities due to forgetting among people with diabetes mellitus. METHODS: Seven focus group interviews and eight telephone interviews were conducted in Canada, Germany, and China. Participants were required to have diabetes, and to have experienced at least two instances in the previous 3 months of forgetting their insulin injection, forgetting the time/amount taken, or questioning if they had taken their injection. Transcripts were coded thematically, based on a grounded theoretical approach. RESULTS: Sixty-four patients participated: 34.4 % with type 1 diabetes and 65.6 % with type 2 diabetes. The mean age was 50.1 years (range, 18-72 years). The analysis included six domains: Forgetting, what people forgot; Reasons for forgetting; Realizing forgetting; Corrective actions; Consequences of forgetting; and Feelings about forgetting. Participants reported forgetting both bolus and basal insulin doses and often felt uncertain about whether, when, and how much insulin they had taken. The major reasons for forgetting were disruptions to their daily routine, distraction by social events, minor interruptions, and being busy. Participants employed a wide variety of strategies and corrective actions when they thought they had forgotten, and often worried as a result. CONCLUSIONS: Forgetting or questioning insulin dosing impacts insulin-taking behavior and contributes to patient uncertainty and worry about their diabetes management. Insulin strategies that assist patients in managing memory-related dosing issues may improve adherence or treatment outcomes.

Non-severe nocturnal hypoglycemic events: experience and impacts on patient functioning and well-being.

PURPOSE: Non-severe nocturnal hypoglycemic events (NSNHEs) are hypoglycemic events that occur during sleep but do not require medical assistance from another individual. This study was conducted to better understand the NSNHEs as patients actually experience them in their daily life, and how they impacted functioning and well-being. METHODS: Nine focus groups were held in four countries with diabetics (Type 1 and Type 2) who had experienced an NSNHE within the previous month: France (2 groups); Germany (2 groups); United Kingdom (2 groups); and United States (3 groups). These groups were audio-taped, translated to English where applicable, and analyzed thematically. RESULTS: Seventy-eight people with diabetes participated in the focus groups: 41 (53 %) were female and 37 (47 %) were male; 24 (31 %) had Type 1 diabetes, and 54 (69 %) had Type 2 diabetes. Participant reports were grouped into several major themes: next day effects, symptoms, sleep impacts, social impacts, corrective action, practical management, feelings about NSNHEs, and work impacts. CONCLUSIONS: People with both Type 1 and Type 2 diabetes experience NSNHEs. The range of impact on these patients is wide, from very mild to severe with a majority of participants experiencing strong impacts that limit their daily functioning. This finding suggests that NSNHEs are more impactful than previously believed.

Comparison of the burden of illness for adults with ADHD across seven countries: a qualitative study.

BACKGROUND: The purpose of this study was to expand the understanding of the burden of illness experienced by adults with Attention Deficit-Hyperactivity Disorder (ADHD) living in different countries and treated through different health care systems. METHODS: Fourteen focus groups and five telephone interviews were conducted in seven countries in North America and Europe, comprised of adults who had received a diagnosis of ADHD. The countries included Canada, France, Germany, Italy, The Netherlands, United Kingdom, and United States (two focus groups in each country). There were 108 participants. The focus groups were designed to elicit narratives of the experience of ADHD in key domains of symptoms, daily life, and social relationships. Consonant with grounded theory, the transcripts were analyzed using descriptive coding and then themed into larger domains. RESULTS: Participants' statements regarding the presentation of symptoms, childhood experience, impact of ADHD across the life course, addictive and risk-taking behavior, work and productivity, finances, relationships and psychological health impacts were similarly themed across all seven countries. These similarities were expressed through the domains of symptom presentation, childhood experience, medication treatment issues, impacts in adult life and across the life cycle, addictive and risk-taking behavior, work and productivity, finances, psychological and social impacts. CONCLUSIONS: These data suggest that symptoms associated with adult ADHD affect individuals similarly in different countries and that the relevance of the diagnostic category for adults is not necessarily limited to certain countries and sociocultural milieus.

"Stress knocks hard on your immune system": asthma and the discourse on stress.

Stress has been described by anthropologists and other scholars as a problematic concept, a discourse, a modern metaphor, a collective representation, and a cultural resource. The vast array of academic work in the arena of stress research belies the historical reality of stress as an object of inquiry; rather, stress is presented as new, the story of its emergence intermingled with processes of industrialization, individualism, and perceptions of modern life. This article traces the uses to which the concept of stress is put in the illness narratives of persons with asthma. It argues that multiple invocations of stress not only make visible the workings of personal responsibility and individualism regarding chronic illness management in the contemporary United States but also gesture toward the social relations of sickness that lie beyond individual control.