Power of narrative: a case study about documenting private insightful experiences while dealing with pain and associated disability.

Objective: People adjusting to living with a chronic disability, such as chronic pain, seek support and resources from societal systems, including health systems, to help them cope with this reality. This case study describes the use of a digital health platform designed to help in that quest. Method: MyHealthMyRecord (MHMR), is being developed to record, register and curate personal private experiences of a chronic condition. MHMR allows users to record and log short (30-90s) personal and private audio-videos of their accommodation-seeking journey in a way that can be encrypted, registered, curated and shared privately. This case study describes the use of a prototype version of the platform by a participant co-designer who experienced a sudden onset of a chronic pain condition, of undetermined origin. System use began three months after the onset of the condition and just after being discharged from several months of hospitalization without any definitive diagnosis. Result: During a three-month period, 65 short unstructured contributions were authored and logged. This paper presents a qualitative analysis of that content. The clips used various communication styles that documented experiences, concerns, issues, positive and negative interactions and pain episodes. Using thematic analysis with open coding, three domains (person-facing, accessibility and system-facing) and eight themes (pain, joy, therapy, environmental, recommendations, technical, culture and communication) were identified. Comments about pain, stress, etc., were the most common and occurred in 75% of all videos while technical and therapy/physio related comments were the fewest and occurred in 3 and 9% of the videos, respectively. Conclusion: We conclude that it is possible to create recordings of events, thoughts, reflections and issues on different aspects affecting an individual's health and well-being impact, including effects of the chronic condition as well as tangential outcomes such as accessibility (or lack of it), using MHMR over a longer period of time. The next steps will be to develop functionality to annotate the recordings, automatically analyze and summarize collections of recordings to make them consumable, useful and understandable to the individual and others, and then to share those analyses and summaries with others. In addition, evaluate this functionality longitudinally with more users.

Pain characteristics and demographics of patients attending a university-affiliated pain clinic in Toronto, Ontario.

BACKGROUND: Pain clinics tend to see more complex chronic pain patients than primary care settings, but the types of patients seen may differ among practices. OBJECTIVE: The aim of the present observational study was to describe the pain and demographic characteristics of patients attending a university-affiliated tertiary care pain clinic in Toronto, Ontario. METHODS: Data were collected on 1242 consecutive new patients seen over a three-year period at the Comprehensive Pain Program in central Toronto. RESULTS: Musculoskeletal problems affecting large joints and the spine were the predominant cause of pain (more prevalent in women), followed by neuropathic disorders (more prevalent in men) in patients with recognizable physical pathology. The most affected age group was in the 35- to 49-year age range, with a mean pain duration of 7.8 years before the consultation. While 77% of the Comprehensive Pain Program patients had relevant and detectable physical pathology for pain complaints, three-quarters of the overall study population also had significant associated psychological or psychiatric comorbidity. Women, in general, attended the pain clinic in greater numbers and had less apparent physical pathology than men. Finally, less than one in five patients was employed at the time of referral. CONCLUSIONS: The relevance of the data in relation to other pain clinics is discussed, as well as waiting lists and other barriers faced by chronic pain patients, pain practitioners and pain facilities in Ontario and Canada.

Ethnocultural and sex characteristics of patients attending a tertiary care pain clinic in Toronto, Ontario.

BACKGROUND: Ethnocultural factors and sex may greatly affect pain perception and expression. Emerging literature is also documenting racial and ethnic differences in pain access and care. OBJECTIVE: To define the sex and ethnocultural characteristics of patients attending a tertiary care, university-affiliated pain clinic in Toronto, Ontario. METHODS: Data were collected on 1242 consecutive, new patients seen over a three-year period at the Comprehensive Pain Program (CPP) in downtown Toronto. Data were compared with the Canada 2001 Census. RESULTS: English-speaking, Canadian-born patients constituted 58.6% of the CPP population, similar to the 2001 Canadian Census data for the Greater Toronto Area. Certain visible minority groups (Indo-Pakistani and Chinese) were significantly under-represented, while European groups were over-represented. While women outnumbered men, they presented with lower levels of physical pathology in general, particularly in certain ethnic groups. Patients from Europe (representing primarily immigrants who arrived in Canada before 1960), were older, by 10 years to 15 years, than the average CPP population, and had a much higher incidence of physical or medical disorders. CONCLUSIONS: The implications of the study and the importance of sex and ethnicity in terms of presentation to Canadian pain clinics are discussed. Future well-designed studies are needed to shed light on the role of both patients' and physicians' ethnicity and sex in pain perception and expression, decision-making regarding pain treatments and acceptance of pain treatments.

Maternal deaths in a developing country: a study from the Aga Khan University Hospital, Karachi, Pakistan 1988-1999.

OBJECTIVE: The maternal deaths occurring over a twelve-year period (1988-1999) in a tertiary referral center were reviewed. The purpose of the study was to assess the causes of these maternal deaths. SETTING: The Aga Khan University Hospital (AKUH) Karachi, Pakistan. METHODS: The medical records of maternal deaths were reviewed. These were women who had either registered for delivery at the hospital; or were referred from another hospital or from home, when an emergency developed. They were either admitted to the Medicine, Surgery and the Obstetrics and Gynaecology Departments at the hospital. RESULTS: A total of 81 maternal deaths were identified, of which five were the registered patients. Causes of deaths were eclampsia, puerperal sepsis and pulmonary embolism. The maternal mortality ratio in the registered patients was 20 per 100,000 live births. Ninety percent of the women were between the age group of 15-35 years. Of these forty two percent were primigravidas, forty four percent of the women died due to direct causes, of which sepsis was the most common cause and accounted for twenty five percent of the total deaths. Indirect causes were responsible for 55.6% of the deaths, including hepatic failure in 21%, other infectious disease in 17% and malignancy in 5% of the cases. CONCLUSION: In developing countries other than obstetrical causes, infectious diseases contribute to the death of women during childbearing years. Comprehensive medical services and adequate obstetrical emergency services can lower maternal mortality rates at all levels.

Female genital tuberculosis revisted.

OBJECTIVE: To assess the clinical presentation of genital tuberculosis and to study various modes of diagnosis and treatment. SETTING: The Aga Khan University Hospital (AKUH), Karachi. METHOD: A retrospective case review of all index female cases of genital tuberculosis, admitted to AKUH over twelve years of period. RESULT: A total of 40 cases of genital tuberculosis were reported during this time period. Majority of cases were between 25-45 years. The commonest presenting symptoms were infertility (42.5%) and abdominal pain (42%). Others included fever, ascites, irregular vaginal bleeding, oligomenorrhea, chest pain and pain in the flanks. Main mode of treatment was antituberculous drug therapy for duration of nine months. Only 3 patients had successful pregnancies. CONCLUSION: Genital tuberculosis should be excluded when managing infertility in females.