Changes in quality of life in individuals with narcolepsy type 1 after the H1N1-influenza epidemic and vaccination campaign in Norway: a two-year prospective cohort study.

OBJECTIVE: Cross-sectional studies show a lower health-related quality of life (HRQoL) in individuals with narcolepsy. We aimed to describe changes in HRQoL after two years of multidisciplinary follow-up in a cohort of mainly post-H1N1 vaccination narcolepsy type-1 (NT1) patients in Norway. METHODS: Prospective-cohort study. Narcolepsy diagnosis was based on the International Classification of Sleep Disorders (third edition). Psychiatric comorbidity was assessed using the Achenbach System of Empirically Based Assessment (ASEBA). HRQoL was evaluated with the Pediatric Quality of Life Inventory (PedsQL™ Generic Core Scales 4.0) at baseline and follow-up. Mean follow-up time was 20.7 (2.7) months. RESULTS: Thirty one patients (18 females) with NT1, mean age 14.6 (SD = 4.8) years answered questionnaires at baseline and follow-up. On a group level, the PedsQL Total Health Summary score significantly improved by a mean of 5.9 (95%CI = 0.4, 11.9), p = 0.038; this was mainly driven by improvements in the Physical Health Summary score by 9.8 (3.0, 16.5) points, p = 0.006 and the School Functioning Scale score by 7.5 (1.0, 13.9) points p = 0.025. The Total ASEBA score was correlated with PedsQL Total Health Summary score at baseline, but not with changes in HRQoL. Sodium oxybate (Xyrem®) treatment at follow up was positively associated with changes in PedsQL Total Health Summary score, after adjusting for age and gender, p = 0.027. CONCLUSION: HRQoL in NT1 patients improved after two years of follow-up. The use of sodium oxybate (Xyrem®) at follow-up was associated with increases in HRQoL. Psychiatric comorbidity was correlated with HRQoL at baseline but did not predict changes in HRQoL at follow-up.

Seeking care for epilepsy and its impacts on households in a rural district in southern Malawi.

BACKGROUND: Epilepsy is a disability as defined in the 2012 Disability Act of the Government of Malawi. OBJECTIVES: This article explores the health-seeking behaviour of people with epilepsy in a rural town in southern Malawi and how having a person with epilepsy impacts on the households' productivity. METHOD: A snowball approach was used to identify persons with various forms of disabilities. The article is based on a bigger study carried out in Malawi which explored how persons with disabilities seek health care. In this bigger study, a total of 63 interviews were done with persons with disabilities or their guardians. Eight of the 63 interviews were with persons with epilepsy and this article is based on these interviews. RESULTS: The study found that persons with epilepsy seek both traditional and modern medicines to treat the condition. Informants mentioned that barriers to accessing western treatment include lack of medicines, congestion at health facilities, lack of knowledge about epilepsy, misdiagnosis by health workers and the belief that epilepsy caused by witchcraft cannot be treated by western medicine. The study also highlights the wider impacts of epilepsy on the household such as the failure of children to attend school, children dropping out of school, stigma and discrimination and households being driven deeper into poverty as a result of seeking care for members with epilepsy. CONCLUSION: The existing barriers to accessing treatment for epilepsy can be addressed by using a combination of public education, simple treatments and regular reviews. Ensuring constant availability of drugs for the treatment of epilepsy is key to effective treatment of the condition. This would contribute to closing the treatment gap for epilepsy as advocated by the Global Campaign against Epilepsy.

Symptom load and functional status: results from the Ullensaker population study.

BACKGROUND: There is evidence to support that the number of self-reported symptoms is a strong predictor of health outcomes. In studies examining the link between symptoms and functional status, focus has traditionally been on individual symptoms or specific groups of symptoms. We aim to identify associations between the number of self-reported symptoms and functional status. METHODS: A questionnaire was sent to people in seven age groups (N = 3227) in Ullensaker municipality in Southern Norway. The Standardised Nordic Questionnaire and the Subjective Health Complaints Inventory were used to record 10 musculoskeletal symptoms and 13 non-musculoskeletal symptoms, respectively. Four COOP-WONCA charts were used to measure functional status. RESULTS: We found a strong linear association between the number of self-reported symptoms and functional status. The number of symptoms explained 39.2% of the variance in functional status after adjusting for the effects of age and sex. Including individual symptoms instead of only the number of symptoms made little difference to the effect of musculoskeletal pain but affected the influence of non-muscular symptoms. Including even minor problems captured substantially more of the variance in functional status than including only serious problems. CONCLUSIONS: The strong association between the number of symptoms and functional status, irrespective of type of symptom, might indicate that the symptoms share some common characteristics. The simple act of counting symptoms may provide an approach to study the relationships between health and function in population studies and might be valuable in research on medically unexplained conditions.

A strong association between non-musculoskeletal symptoms and musculoskeletal pain symptoms: results from a population study.

BACKGROUND: There is a lack of knowledge about the pattern of symptom reporting in the general population as most research focuses on specific diseases or symptoms. The number of musculoskeletal pain sites is a strong predictor for disability pensioning and, hence, is considered to be an important dimension in symptom reporting. The simple method of counting symptoms might also be applicable to non-musculoskeletal symptoms, rendering further dimensions in describing individual and public health. In a general population, we aimed to explore the association between self-reported non-musculoskeletal symptoms and the number of pain sites. METHODS: With a cross-sectional design, the Standardised Nordic Questionnaire and the Subjective Health Complaints Inventory were used to record pain at ten different body sites and 13 non-musculoskeletal symptoms, respectively, among seven age groups in Ullensaker, Norway (n = 3,227). RESULTS: Results showed a strong, almost linear relationship between the number of non-musculoskeletal symptoms and the number of pain sites (r = 0.55). The number and type of non-musculoskeletal symptoms had an almost equal explanatory power in the number of pain sites reported (27.1% vs. 28.2%). CONCLUSION: The linear association between the number of non-musculoskeletal and musculoskeletal symptoms might indicate that the symptoms share common characteristics and even common underlying causal factors. The total burden of symptoms as determined by the number of symptoms reported might be an interesting generic indicator of health and well-being, as well as present and future functioning. Research on symptom reporting might also be an alternative pathway to describe and, possibly, understand the medically unexplained multisymptom conditions.

Change in the number of musculoskeletal pain sites: A 14-year prospective study.

Musculoskeletal pain that affects multiple body sites is typically regarded as comorbidity to single-site pain. Pain present in multiple sites, however, is more severe and disabling compared to single-site pain. This study aimed to prospectively investigate the change in the number of pain sites over 14years, in addition to identifying predictors of multi-site pain. In 1990 and 2004, questionnaires about musculoskeletal pain were mailed to six birth cohorts in Ullensaker, Norway. Data on demographic, lifestyle, and health-related variables were also collected. Participation rate in 1990 was 67.2% and among those 60.4% participated in 2004. A slight increase in the average number of pain sites occurred between 1990 and 2004, but results showed a relatively stable pattern of pain reporting over a period of 14 years. Several demographic, lifestyle, and health-related variables in 1990 predicted the number of pain sites at follow-up in the bivariate analyses. However, only sex, age, sleep quality, and educational level remained significant in the final multivariate model after controlling for the number of pain sites at baseline. The final model explained 35% of the variance, of which nearly 80% was accounted for by the number of pain sites at baseline. As the pattern of reporting the number of pain sites appears relatively stable across adulthood and baseline multi-site pain demonstrated strong predictive utility, studies investigating the occurrence of multi-site pain in children and adolescents are recommended to determine potential causal factors contributing to the early course and development of multi-site musculoskeletal pain.

Does the number of musculoskeletal pain sites predict work disability? A 14-year prospective study.

Various risk factors associated with disability pensioning have been reported. This study investigated the relationship between the number of pain sites and risk of receiving a disability pension. We hypothesised that risk of work disability would increase as the number of pain sites increased, even after controlling for potential confounders. In 1990 and 2004, questionnaire on musculoskeletal pain was sent via post to six age groups in Ullensaker, Norway. Data on demographic, health and work-related variables were also collected. After excluding individuals due to reach retirement age in 2004, we followed 1354 (66%) persons who were classified in 1990 as "employed", "unemployed", "homemaker", or "student". Among them, 176 persons had received long-term or permanent work disability pension in 2004. Bivariate analyses showed that the prevalence of disability pensions was strongly associated with the number of pain sites. Controlling for gender and age almost unaltered the relationship. However, a model controlling for all significant confounders showed that general health and sick leave previous year captured almost all the predictive power of the number of pain sites on work disability. Since these variables could be seen as intermediate variables and not confounders, they were excluded in a new model which gave a strong "dose-response" relationship between number of pain sites and disability with a 10-fold increase from 0 to 9-10 pain sites. The predictive validity of the number of pain sites in determining future disability renders this simple measurement useful for future research on musculoskeletal pain and functioning.

Localized or widespread musculoskeletal pain: does it matter?

Although epidemiological descriptions indicate that musculoskeletal pain is often widespread, still a lot of musculoskeletal pain is diagnosed and treated as localized pain. This led us to question whether localized pain exists at all and to evaluate its functional impact compared with that of widespread musculoskeletal pain. Therefore, this study aimed to describe the prevalence of localized and widespread musculoskeletal pain and its association to functional ability. In 2004, questionnaires about musculoskeletal pain were mailed to seven age groups in Ullensaker, Norway: 24-26, 34-36, 44-46, 54-56, 64-66, 74-76, and 84-86 years old. In total, 3325 persons participated (participation rate 54.4%). We excluded the oldest age group and persons who did not respond to any questions about pain during the previous week, thus reducing the participants in this study to 3179. Although musculoskeletal pain occurred frequently in the population, localized pain, in the meaning of single site pain, was relatively rare. Most people having musculoskeletal pain reported pain from a number of sites. Furthermore, experiencing single site pain did not have a large impact on physical fitness, feelings, or daily and social activities. Functional problems increased markedly, in an almost linear way with increasing number of pain sites. These findings suggest that musculoskeletal pain usually coexists with pain in other body regions and that the functional consequences are highly dependent on how widespread the pain is. This should have important implications for future research into musculoskeletal pain, and for clinical and social insurance medicine.

Number of pain sites is associated with demographic, lifestyle, and health-related factors in the general population.

Research on widespread pain often relies upon case definitions bounded by duration limits or "cut-offs." In clinical reality, however, there are no natural cut-off points between localized and widespread pain. Rather, pain is best represented by a continuum of "widespreadness" from localized pain to pain spread across the body. The objective of this paper was to describe the number of pain sites (NPS) reported in a population study and its association with demographic, lifestyle, and health-related factors. Using a cross-sectional design, the Standardized Nordic Questionnaire was used to measure musculoskeletal pain among seven age groups in Ullensaker, Norway (n=2926). Results showed that women reported a higher mean NPS than men. A higher NPS was also found for individuals who were separated or divorced, undergoing rehabilitation, or who had a disability pension. Additionally, greater NPS was reported by smokers, individuals with less physical activity, and a higher BMI. A strong linear relationship was found between NPS and reduction in overall health, sleep quality, and psychological health. Results from a multivariate linear regression analysis showed that overall health, sleep quality, and gender demonstrated the strongest associations with increasing NPS, accounting for 31.4% of the variance. Our study indicates that the straightforward and simple method of counting the NPS could be important in managing the complex problem of musculoskeletal pain.