Quality of Life Issues Facing MS Patients
Impairments Start at Diagnosis
After receiving the diagnosis of MS, many patients enter into a state of extreme distress, envisioning themselves incapacitated. This initial response often informs QoL by casting a hue of pessimism over the patient's perceptions. These reactions can be mitigated by clinicians with an individualized approach that incorporates time, repetition, flexibility, and understanding, presented in a manner that is easily comprehensible to patients.
Cognition in MS
Early in the course of MS, patients may start to experience cognitive issues, such as processing speed and handling complex information. These issues can impact upon a patient’s QoL by affecting employment, relationships, and other domains.
Ways to Improve Cognition
There are several modalities that can be helpful in enhancing or preserving cognition in patients with MS. These include leisure activities such as reading, Tai Chi, aerobic exercise, and yoga.
Sexuality in MS
Sexual dysfunction is one of the major causes of distress in patients with MS, and has been shown to have an even more detrimental impact on QoL than the severity of disability. However, despite its high prevalence and the distress it causes, it is rarely discussed with clinicians perhaps due to embarrassment on the patient's part. Therefore, the conversation should be initiated by the clinician shortly after diagnosis, and should combine medical as well as psychosocial approaches.
Addressing Sexual Dysfunction
Interventions may include acknowledging the patient's sexual needs, providing information and education, creating a safe forum for patients to express sexual concerns, and referring patients to specialists and other resources if appropriate.
Impact on Family and Relationships
The patient's family and partner are negatively impacted by the patient's illness. Since most MS patients are diagnosed at a relatively young age, parents' anxiety, denial and fear must also be taken into account. Divorce rates are also higher in patients with MS.
A recent study found that partners of individuals with MS reported “being unsure of what the future might hold and feeling helpless and out of control" and that other people could not understand and support them, which led to a feeling of social isolation. A collaborative family-centered intervention model including a psychoeducational component, has been shown helpful for families of those with MS.
MS and Employment
MS has an adverse effect on the capacity of patients to remain employed. Fatigue is the most common symptom that causes patients to leave work or reduce employment hours. Discontinuing employment can lead to a worsening of other MS symptoms.
Interventions for Fatigue
Interventions for fatigue include psychoeducation, addressing lifestyle factors (eg, diet and exercise), pacing (eg, rest breaks between activities), energy conservation and work simplification strategies (eg, use of assistive devices, adaptive equipment, and gait aids), supplementation with vitamin D, and structured exercise programs (eg, aerobic exercise and yoga).
Social isolation is common in individuals with MS for a variety of reasons, including declining ability to engage in physical activity, cognitive changes, changes in relationships and employment, and depression.
Social and Emotional Support
Interventions oriented toward improving depression, increasing positive social interactions, expressed affection, working with families surrounding issues of emotional support, and providing psychoeducation may be helpful.
Arguably, QoL may be an even more relevant outcome in MS patient than more traditional measurements, such as disability or neurological impairment. Clinicians should remain cognizant of the “invisible” issues that contribute to impaired QoL, initiate discussions with patients, and make helpful interventions available.
MS patients face “visible and invisible” issues related either directly or indirectly to their disease, which significantly impacts quality of life (QoL). They are often reluctant to discuss these issues, and healthcare providers frequently do not inquire about them.