"Challenges and facilitators-navigating in the landscape of spinal cord injury neuropathic pain"-a qualitative study on the use of prescribed drugs.

STUDY DESIGN: A qualitative study with an emergent design using semi-structured interviews in focus groups. OBJECTIVES: To explore the expectations, experiences and desires among individuals who are prescribed drugs for spinal cord injury (SCI) neuropathic pain (NP). SETTING: SCI rehabilitation centre. METHODS: Eighteen informants with SCI and NP were enrolled. The informants originated from large and small cities in southern Sweden. Data were collected in focus groups consisting of 4-5 individuals in four separate sessions. An emergent design was employed using an interview guide containing open questions. The interviews were transcribed verbatim and data were analyzed according to qualitative content analysis. RESULTS: A model of three themes emerged: "Balancing between pain and side-effects" described the difficult choices the informants had to make between drugs and their unwanted side-effects and pain, "Desiring competence and structure in pain management" described the informants wishes regarding pain management and "From hope to personal solutions" described the process from hope of total pain relief from drugs to the development of personal strategies. CONCLUSIONS: There is a great need for improvement of SCI-related neuropathic pain management since recommended drugs are insufficiently effective and accompanied by severe side-effects that impact quality of life but also due to structural limitations and physicians' lack of competence in pain management.

'The moment I leave my home - there will be massive challenges': experiences of living with a spinal cord injury in Botswana.

BACKGROUND: When suffering a spinal cord injury (SCI), the patient and family face numerous challenges regardless of socio-economic level. The stigmatisation of persons with disabilities has been reported, however, reports from Southern Africa are largely lacking. PURPOSE: To explore the experiences of living with a traumatic SCI in Botswana concerning perceived attitudes, obstacles and challenges. METHOD: A qualitative approach with semi-structured interviews was conducted. Thirteen community-dwelling persons who have lived with an SCI for at least two years participated. RESULTS: A theoretical model was formed that illustrate the associations between the core category, Self, and the categories Relationships and Society. The model illustrates that personal resources, including a strong identity and a positive attitude, are crucial to the experience of inclusion in the community. A supportive family, a source of income, and faith were strong facilitators, while inaccessibility and devaluing attitudes were barriers. Having a disability led to increased risk of poverty and social exclusion. CONCLUSION: This study emphasised the importance of personal resources, family support, and improved accessibility to facilitate inclusion in the society. Informants requested legislation to advocate for the rights of persons with disabilities to be respected, with the aim of moving towards an equal accessible society. Implications for Rehabilitation Reclaiming or restructuring one's identity after a SCI is crucial for the person's ability to move on and develop beneficial coping strategies. Support from family and friends, staff and peer support are crucial parts in that process. Spirituality, values, needs and coping strategies vary profoundly among persons sustaining disabling injuries. In striving to optimise care, rehabilitation staff needs to be attentive to the personal resources and preferences to be able to individualise care, encounter, and facilitate transition back to the community. Family members play a crucial part in rehabilitation. It is essential for the patients' well-being and care that they get explicit descriptions of the patient's abilities. Living in a well-adapted home will facilitate well-being, independence, and return to work. Rehabilitation staff needs to focus their efforts on making this successful prior to discharge from hospital.

Needs and requests--patients and physicians voices about improving the management of spinal cord injury neuropathic pain.

PURPOSE: The present purpose was to explore patients' and involved physicians' needs and requests for improving their management of neuropathic pain following spinal cord injury (SCI). METHODS: Sixteen patients with SCI and neuropathic pain, and nine physicians, were interviewed in focus-groups or individual interviews. An emergent design was used and the interviews and analyses were carried out in parallel, making it possible to use and deepen new emerging knowledge. The interviews were transcribed verbatim and processed according to content analysis. RESULTS: A final model with four themes described the results. Three themes covered the current situation: limitations in structure, lack of knowledge and competence, and frustrations. A fourth theme, needs and requests, described suggestions by patients and physicians for future improvements. Suggestions included increased participation, increased patient involvement in the pain rehabilitation process, support in the process of learning to live with pain, implementation of multi-modal pain rehabilitation, and the use of complementary treatments for neuropathic pain. CONCLUSION: Neuropathic pain following SCI needs to be assessed and treated using a structured, inter-disciplinary, multi-modal rehabilitation approach involving patients in planning and decision-making. IMPLICATIONS FOR REHABILITATION: For improving SCI neuropathic pain management, there is a great need for individually-tailored management, planned in a dialogue on equal terms between health care and the patient. Patients desire continuity and regularity and the possibility of receiving complementary treatments for SCI neuropathic pain. Access to structured pain rehabilitation is needed. Support and tools need to be provided in the learning-to-live with pain process.

Phenotypes and predictors of pain following traumatic spinal cord injury: a prospective study.

UNLABELLED: Pain is a serious consequence of spinal cord injury (SCI). Our aim was to investigate the temporal aspects of different types of pain following traumatic SCI and to determine possible predictors of neuropathic pain. Prospective data on 90 patients were collected at 1, 6, and 12 months after traumatic SCI. The patients completed questionnaires on pain severity, descriptors, and impact and underwent clinical examination with bedside sensory testing. Eighty-eight patients completed the 12-month follow-up. Approximately 80% of patients reported any type of pain at all 3 time points. Neuropathic pain related to SCI increased over time, and musculoskeletal pain decreased slightly, with both being present in 59% of patients at 12 months; other neuropathic pain not related to SCI and visceral pain were present in 1 to 3%. At-level neuropathic pain present at 1 month resolved in 45% and below-level pain resolved in 33%. Early (1 month) sensory hypersensitivity (particularly cold-evoked dysesthesia) was a predictor for the development of below-level, but not at-level, SCI pain at 12 months. In conclusion, the present study demonstrates phenotypical differences between at-level and below-level SCI pain, which is important for future studies aiming to uncover underlying pain mechanisms. PERSPECTIVE: The finding that early sensory hypersensitivity predicts later onset of below-level central neuropathic pain may help to identify patients at risk of developing neuropathic pain conditions after traumatic spinal cord injury. Information about onset of pain may help to identify different phenotypes in neuropathic pain conditions.

Effects of seated double-poling ergometer training on aerobic and mechanical power in individuals with spinal cord injury.

OBJECTIVE: To determine whether regular interval training on a seated double-poling ergometer can increase physical capacity and safely improve performance towards maximal level in individuals with spinal cord injury. METHODS: A total of 13 subjects with spinal cord injury (injury levels T5-L1) performed 30 sessions of seated double-poling ergometer training over a period of 10 weeks. Sub-maximal and maximal double-poling ergometer tests were performed before (test-retest) and after this training period. Oxygen uptake was measured using the Douglas Bag system. Three-dimensional kinematics were recorded using an optoelectronic system and piezoelectric force sensors were used to register force in both poles. RESULTS: The mean intra-class correlation coefficient for test-retest values was 0.83 (standard deviation 0.11). After training significant improvements were observed in people with spinal cord injury in oxygen uptake (22.7%), ventilation (20.7%) and blood lactate level (22.0%) during maximal exertion exercises. Mean power per stroke and peak pole force increased by 15.4% and 23.7%, respectively. At sub-maximal level, significantly lower values were observed in ventilation (-12.8%) and blood lactate level (-25.0%). CONCLUSION: Regular interval training on the seated double-poling ergometer was effective for individuals with spinal cord injury below T5 level in terms of improving aerobic capacity and upper-body power output. The training was safe and did not cause any overload symptoms.

Burnout in patients with chronic whiplash-associated disorders.

This study sought to assess burnout and its relation to pain, disability, mood and health-related quality of life in a group of patients with chronic whiplash-associated disorders (WAD). Forty-five patients with chronic WAD (≥3 months) referred to a multidisciplinary rehabilitation centre were included. A questionnaire covering data on background and lifestyle, the Shirom Melamed Burnout Questionnaire, pain intensity, the Neck Disability Index, the Hospital Anxiety and Depression Scale and the EQ-5D was filled in before the first visit to the clinic. A high proportion of burnout as measured using the Shirom Melamed Burnout Questionnaire was found in the patient group (87%). Burnout correlated moderately with present pain intensity, neck disability, depression and health-related quality of life. The results indicate the possible clinical importance of burnout in relation to chronic WAD and the need for further studies including a larger study population and a longitudinal study design.

"But I know what works"--patients' experience of spinal cord injury neuropathic pain management.

PURPOSE: To explore and obtain increased knowledge about (i) strategies and treatments used by individuals with neuropathic pain following spinal cord injury (SCI) for handling long-term pain, and (ii) their experience, needs and expectations of SCI neuropathic pain management. METHODS: Qualitative methods with an emergent research design were used. Eighteen informants who suffered from long-term SCI neuropathic pain participated. Data were collected with diaries and thematized research interviews. Content analysis and constant comparison according to grounded theory were used for the analyses. RESULTS: A model with four categories emerged: "Pain is my main problem" explained the impact of pain in the informants' everyday life; "Drugs--the health care solution" described the informants' experience of pain management; "The gap in my meeting with health care" described the discrepancy between what the informants wanted and what health care could offer. "But...this works for me" described treatments and strategies, which the informants found helpful for pain control and pain relief. CONCLUSION: Neuropathic pain, one of the major problems following SCI, is difficult to treat successfully. To improve treatment outcome, health care needs to listen to, respond to and respect the patient's knowledge, experience and wishes. Future research needs to address treatments that patients find effective.

Patients' perspectives on pain.

Nociceptive and neuropathic pain (NP) are common consequences following spinal cord injury (SCI), with large impact on sleep, mood, work, and quality of life. NP affects 40% to 50% of individuals with SCI and is sometimes considered the major problem following SCI. Current treatment recommendations for SCI-NP primarily focus on pharmacological strategies suggesting the use of anticonvulsant and antidepressant drugs, followed by tramadol and opioid medications. Unfortunately, these are only partly successful in relieving pain. Qualitative studies report that individuals with SCI-related long-lasting pain seek alternatives to medication due to the limited efficacy, unwanted side effects, and perceived risk of dependency. They spend time and money searching for additional treatments. Many have learned coping strategies on their own, including various forms of warmth, relaxation, massage, stretching, distraction, and physical activity. Studies indicate that many individuals with SCI are dissatisfied with their pain management and with the information given to them about their pain, and they want to know more about causes and strategies to manage pain. They express a desire to improve communication with their physicians and learn about reliable alternative sources for obtaining information about their pain and pain management. The discrepancy between treatment algorithms and patient expectations is significant. Clinicians will benefit from hearing the patient´s voice.

Acupuncture and massage therapy for neuropathic pain following spinal cord injury: an exploratory study.

OBJECTIVE: The study sought to explore the possibility of using acupuncture and massage therapy for relieving neuropathic pain following spinal cord injury (SCI). DESIGN: 30 individuals with SCI and neuropathic pain were assigned to treatment of either massage or acupuncture, with 15 individuals in each group. Both groups received treatment twice weekly for 6 weeks. Treatments were evaluated at the end of treatment and 2 months later (follow-up). RESULTS: Data were analysed on an intention-to-treat basis. Within the groups, ratings of present pain, general pain, pain unpleasantness and coping improved significantly at the end of treatment after acupuncture compared to baseline values, and following massage therapy ratings of pain interference on the Multidimensional Pain Inventory improved. At follow-up no significant improvements were seen. Between-group differences were seen regarding ratings of worst pain intensity at the end of treatment, and regarding pain unpleasantness and coping with pain at follow-up, both in favour of acupuncture. At the end of treatment, eight of the 15 individuals receiving acupuncture and nine receiving massage reported an improvement on the Patient Global Impression of Change Scale, and at follow-up six patients in the acupuncture group and one patient in the massage group still reported a favourable effect from the treatment. Few side effects were reported and neither dropout from the study did this due to adverse events. CONCLUSION: Neuropathic pain following SCI is often only partially responsive to most interventions. Results from this study indicate, however, that both acupuncture and massage therapy may relieve SCI neuropathic pain. For this reason, larger randomised controlled trials are warranted for assessing the long-term effects of these treatments.

Screening tools for neuropathic pain: can they be of use in individuals with spinal cord injury?

Pain of both neuropathic and nociceptive aetiology is common after spinal cord injury (SCI), and classifying pain is sometimes a challenge. The objective of this study was to test the usefulness of the Swedish version of the screening tools Douleur Neuropathique 4 questions (DN4), the Leeds Assessment of Neuropathic Symptoms and Signs (LANSS), the Neuropathic Pain Questionnaire (NPQ), and the painDETECT Questionnaire (PD-Q) in individuals with SCI and pain. A further objective was to define pain descriptors able to discriminate neuropathic pain from nonneuropathic pain. Forty individuals with SCI ≥1 year and pain ≥6 months were examined by a specialised physician and assessed twice using the 4 screening tools. The analysis included tests of reliability (test-retest) and validity (calculation of sensitivity, specificity, and overall agreement), an explorative analysis of the cutoff scores and regression analysis for identifying predictors of diagnostic accuracy. Our results indicate that reliability was good to very good for 3 of the screening tools, DN4, LANSS, and NPQ with a Cohen's kappa coefficient between 0.70 and 1.00. DN4 showed the highest sensitivity (93%), followed by PD-Q (68%), NPQ (50%), and LANSS (36%). LANSS and NPQ demonstrated the highest specificity (100%), followed by PD-Q (83%) and DN4 (75%). Diagnostic accuracy for the tools was for DN4 88%, PD-Q 78%, NPQ 65%, and LANSS 55%. A final model showed that 3 items, hypoesthesia to touch, burning pain, and numbness, could discriminate pain in this cohort of individuals with SCI with a high goodness of fit.

Spasticity and bone density after a spinal cord injury.

STUDY DESIGN: Descriptive, cross-sectional study. OBJECTIVE: To assess the relationship between spasticity and bone mineral density in the lower extremities in individuals with a motor complete spinal cord injury. METHODS: Eighteen individuals, matched for time since injury, gender, and age, were included in the study. Nine men had severe spasticity, and 9 men had spasticity that was either mild or not present. Comparisons regarding bone mineral density were made using dual energy X-ray absorptiometry. Regions of interest measured were total leg, pelvis, femoral neck and total hip. Between-group differences regarding fat and lean tissue were analysed. RESULTS: Background data, such as weight, height, standing and exercising habits, smoking and alcohol use, were similar in both groups. There was no difference between the groups regarding bone mineral density. All of the participants presented with osteoporosis or osteopaenia values at the hips. Participants with severe spasticity had larger muscle volume than those with none or mild spasticity. No correlations between bone mineral density and body composition with age or time since injury were seen. CONCLUSION: No difference in bone mineral density dependent on spasticity was detected in this study, but all included participants showed osteopaenia or osteoporosis at the hip, but not in full body values. Individuals with severe spasticity had greater muscle mass compared with those with no or mild spasticity.

Pain relief in women with fibromyalgia: a cross-over study of superficial warmth stimulation and transcutaneous electrical nerve stimulation.

OBJECTIVE: To compare the effects of portable superficial warmth with transcutaneous electrical nerve stimulation on pain in patients with fibromyalgia. METHODS: The study had a randomized cross-over design. A total of 32 patients with fibromyalgia were randomly assigned to 2 groups. After instruction, the patients treated themselves using a portable device providing superficial warmth (42 degrees C) or a transcutaneous electrical nerve stimulation apparatus. After 3 weeks the patients switched therapy. The patients rated pain intensity on a 0-100 numerical rating scale before and after each treatment. After 6 weeks, patients were questioned concerning therapy preference. RESULTS: There was no difference in level of pain relief when comparing the 2 treatment modes. Median pain intensity in patients using warmth therapy decreased from 77.5 on the numerical rating scale before treatment to 62.5 after treatment and in patients using transcutaneous electrical nerve stimulation from 80 to 62.5. Ten patients reported a reduction of 20 units or more on the numerical rating scale after warmth therapy, as did 10 after transcutaneous electrical nerve stimulation. Seventeen of 32 patients preferred warmth therapy and 10 preferred transcutaneous electrical nerve stimulation. CONCLUSION: Sensory stimulation with superficial warmth or transcutaneous electrical nerve stimulation yielded comparable temporary pain reduction in patients with fibromyalgia. Both procedures are self-administered, safe and in-expensive.

Transcutaneous electrical nerve stimulation for treatment of spinal cord injury neuropathic pain.

The aim of the study was to assess the short-term effects of high- and low-frequency (HF and LF, respectively) transcutaneous electrical nerve stimulation (TENS) for neuropathic pain following spinal cord injury (SCI). A total of 24 patients participated in the study. According to the protocol, half of the patients were assigned to HF (80 Hz) and half to LF (burst of 2 Hz) TENS. Patients were instructed to treat themselves three times daily for 2 weeks. After a 2-week wash-out period, patients switched stimulation frequencies and repeated the procedure. Results were calculated on an intent-to-treat basis. No differences between the two modes of stimulation were found. On a group level, no effects on pain intensity ratings or ratings of mood, coping with pain, life satisfaction, sleep quality, or psychosocial consequences of pain were seen. However, 29% of the patients reported a favorable effect from HF and 38% from LF stimulation on a 5-point global pain-relief scale. Six of the patients (25%) were, at their request, prescribed TENS stimulators for further treatment at the end of the study. In conclusion, TENS merits consideration as a com plementary treatment in patients with SCI and neuropathic pain.

Tramadol in neuropathic pain after spinal cord injury: a randomized, double-blind, placebo-controlled trial.

OBJECTIVES: To assess the efficacy and safety of tramadol for relieving neuropathic pain after spinal cord injury (SCI). METHODS: Thirty-six patients with SCI and neuropathic pain were enrolled in a randomized, double-blind, placebo-controlled trial, and 35 patients were included in the intention-to-treat analysis based on all patients taking at least 1 dose of study medication. Of the intention-to-treat population, 23 were randomized to treatment with tramadol and 12 to placebo. Patients were given study medication for 4 weeks, starting with 3 times 50 mg tramadol daily or 3 times 1 tablet of placebo. RESULTS: At evaluation, 4 weeks after the treatment initiation, ratings of pain intensity were lower in those randomized to tramadol compared with those on placebo. Pain severity scores on the Multidimensional Pain Inventory had also decreased in patients on tramadol. No between-group differences in pain affect were observed. Adverse events were substantial and caused 43% of those on tramadol and 17% on placebo to withdraw from the study. DISCUSSION: Tramadol might be tried for neuropathic pain after SCI after the use of gabapentin/pregabalin, and tricyclic antidepressants have been found to be insufficient. Titration should be slow and individual, to minimize the risk of adverse events.

Shoulder pain in persons with thoracic spinal cord injury: prevalence and characteristics.

OBJECTIVE: To document the prevalence of shoulder pain, associated patient characteristics, and intensity and interference with shoulder function in activities in wheelchair users. DESIGN: A cross-sectional survey. PATIENTS: Individuals with a thoracic spinal cord injury. METHODS: A 3-part questionnaire on patient characteristics, medical history, supplemental questions, and the Wheelchair Users Shoulder Pain Index was administered to 101 patients. RESULTS: Of the 88 subjects (87%) who completed the questionnaire, 40% reported experiencing current shoulder pain, often chronic in nature. The highest median intensity of shoulder pain was reported for pushing the wheelchair up ramps or inclines outdoors. Reports of limitations regarding the ability to use the shoulder in activities were common. Most subjects used no upper extremity assistive devices during transfer or wheelchair propulsion. Of those with current shoulder pain, 37% had not sought medical attention. Age was associated with ongoing shoulder pain. CONCLUSION: Shoulder pain is a common problem in wheelchair users with a thoracic spinal cord injury, it seems more likely to occur with increased age, and is a potential cause of activity limitations. The findings indicate a need to develop programmes of prevention, patient education, diagnosis and treatment, possibly including more frequent use of upper extremity assistive devices.