The final section of this review presents articles discussing the most common health concerns experienced by people with SCI in the community, and those issues most typically seen in primary care. This section is made up of 13 surveys of patients and providers, aiming to increase awareness of the nature and scope of health concerns typically experienced by people living in the community with spinal cord injuries. Table 4 summarizes the health issues and information needs of individuals with SCI when they seek primary care.
There is consensus in the literature about the issues that are of most concern to people with spinal cord injuries when they seek primary care. Fifty-eight percent (58%) of contacts with the family physician were related to secondary complications (van Loo et al. 2009). Most consistently mentioned were bowel and bladder problems and pain (Donnelly et al. 2007; Collins et al. 2005; Glickman et al. 1996; Warms 1987; Williams 2005). Eighty percent (80%) of SCI patients in primary care bring multiple problems to their family physician (Glickman et al. 1996), and according to Warms (1987), 80% of the issues raised are disability-related.
Both Collins et al. (2005) and Beatty et al. (2003) refer to the need for adaptive equipment and prescription medications as concerns in primary care. Collins et al. (2005) notes that these are key reasons why individuals seek an annual check-up. Beatty et al. (2003) notes that 94% of patients with SCI have needs for prescription medications, and 69% for adaptive equipment. In both instances, the primary care physician is the coordinator for these needs. They also found that 93% of prescription medication needs and 69% of equipment needs were met.
Ashe and associates (2009) provide support for the importance of bone density, and the need for pharmacological treatment if indicated. Two articles highlighted the need for attention to skin care and spasticity. Glickman and associates (1996) claim that 42% of patients have dermatological issues and 65% need help with the management of spasticity. van Loo’s sample in the Netherlands (2009) demonstrated that 34% of all secondary complications were preventable, especially skin complications, which were judged to be 53% preventable.
Unfortunately, there are a number of issues where unmet needs have been observed in primary care. Donnelly and colleagues (2007) noted that issues of psychological health, sexual and reproductive health, lifestyle and community not be well covered by primary care, whether it came from a family physician or physiatrist. McDermott and colleagues (2005) noted that depression is significantly higher among people with disabilities, and that it has a significantly earlier onset when the disability is of a traumatic origin. Warms (1987) also found unmet needs for health promotion and lifestyle issues.
One frequently overlooked area of primary care for people with spinal cord injuries is the area of sexual and reproductive health. Oshima and colleagues (1998) note that physicians are typically not prepared for the special issues associated with the gynaecological or obstetric needs of women with spinal cord injuries, or of the procedures necessary to provide them with a reasonable standard of primary care.
Several studies referred to the information needs of people with spinal cord injuries in primary care. Vaidyanathan and colleagues (2001) found unequivocally that patients wanted clear information about their health, preferably in written form. They wanted information shared among health providers as well as with themselves. Gontkovsky and colleagues (2007) also identified information needs in a spinal cord injured population, especially information about aging, current research and other educational offerings. Ethnic minorities in particular had a difficult time having their information needs met.
Fann and colleagues (2011) substantiated previous findings about high prevalence of psychiatric conditions among people with SCI, and found that only a small percentage (11%) were given treatment consistent with clinical guidelines. The importance of treatment for psychiatric conditions is highlighted by Findley et al. (2011) who found that mental illness and substance abuse disorders are associated with excess mortality.
Information needs continued to be an issue for people with SCI. Norman and associates (2010) found that participants depended on family physicians as an important source of information on the management of chronic pain, and were frequently unsatisfied, and felt “alone with their pain”. Family physicians were an important source of health information post discharge according to a cohort of individuals followed by Thietje and colleagues (2011). Only 47% of this cohort, however, had good knowledge about skin and bladder care at discharge from rehabilitation, and the level of knowledge did not improve up to 2½ years post-discharge. Those particularly at risk due to poor information were those over 65 years of age, and those with lower education. Weaver and associates (2011) looked at smoking and found 22% of their sample were currently smokers. Smoking was shown to exacerbate a number of important health conditions among people with SCI, including chronic pain, respiratory conditions and depression. Family physicians were seen as an important source of information about health risks and smoking cessation strategies.
Two articles by the same group of authors examined prescription of antibiotics for acute respiratory infections among people with SCI. The first study (Evans et al. 2010) showed that in uncomplicated acute cases, antibiotic use did not change subsequent health service utilization (ED visits or hospital admissions) following a visit with an acute respiratory infection. The second study (Evans et al. 2011) offered the perspective of family physicians, the majority of whom recognized the risks of over-prescribing antibiotics and were in favour of surveillance strategies and efforts to reduce the use of antibiotics.
There is level 2 evidence that patient knowledge of two key health risks (skin and bladder management) is poor at the point of discharge from rehabilitation (Thietje et al. 2011).
There is level 3 evidence that depression rates are higher and onset is earlier among individuals with disabilities, especially traumatic-onset disabilities, such as SCI, compared to controls (McDermott et al. 2005).
There is level 4 evidence that antibiotic prescription does not significantly affect subsequent health service use among acute uncomplicated cases of respiratory infection (Evans et al. 2010).
There is Level 5 evidence that veterans with mental illness and substance abuse issues are at increased risk of mortality (Findley al. 2011).
There is level 5 evidence that relatively few confirmed cases of depression are receiving guideline-level treatment (Fann et al. 2011).
There is Level 5 evidence that physicians are aware that antibiotic prescription must be carefully monitored to avoid antibiotic resistance (Evans et al. 2011).
There is level 5 evidence that 80% of issues raised by patients with SCI in primary care are disability-related (Warms 1987).
There is level 5 evidence that 52% of contact with GPs was regarding secondary complications; 34% of secondary complications are believed to be preventable; 72% of people with SCI report an unmet need for health care related to secondary health conditions (van Loo et al. 2009).
There is level 5 evidence that physiatrists consider bone health after SCI as an important issue and that they favour pharmacological treatment (Ashe et al. 2009).
There is level 5 evidence that the majority of medical residents are not comfortable treating a woman with tetraplegia who has recently become pregnant (Oshima et al. 1998).
There is level 5 evidence that individuals with chronic SCI would like more information regarding SCI and health risks. Needs for lifestyle and emotional issues often go unmet (Donnelly et al. 2007).
There is level 5 evidence that information about chronic pain and pain management strategies is insufficient (Norman et al. 2010).
There is level 5 evidence that ethnic minorities had the greatest unmet needs for information (Gontkovsky et al. 2007).
There is level 5 evidence that individuals with chronic SCI would like more information regarding aging with SCI, SCI research, and SCI educational information; ethnic minorities had the greatest unmet needs for information (Gontkovsky et al. 2007).
There is level 5 evidence that 90% of individuals with SCI would like to receive written information about their condition following a medical checkup (Vaidyanathan et al. 2001).
Individuals with spinal cord injury consistently raise common health issues in primary care. The most commonly raised issues are bowel, bladder and pain. Also of significant concern are skin care, equipment, medication needs, depression and bone density.
The majority of the issues raised in primary care are disability-related – specifically, they are secondary complications of the spinal cord injury.
Unmet needs in primary care pertain primarily to information needs, psychological issues, sexual and reproductive health, health promotion and lifestyle.