Table 4

Examples of secondary progressive multiple sclerosis (SPMS) transition and challenges over time

InterviewP15P19P12
Pretransitioning contextParticipant transitioned to SPMS 14 years after initial diagnosis. Before the MS diagnosis, she was diagnosed with depression. She needed support after the diagnosis, but none was offered.Participant transitioned to SPMS 7 years after initial diagnosis. Unable to work due to MS, and he faced financial difficulties after the diagnosis of MS.Participant transitioned to SPMS 21 years after initial diagnosis. Before the MS diagnosis, she had a lot of close friends and family members that she saw regularly.
First interviewShe expected to have transitioned to SPMS; it was not a surprise, but her neurologist was reluctant to diagnose transition to SPMS. Her condition has progressed a lot after the transition, especially her mobility, pain and fatigue. She was not sure whether anything could be done with SPMS. She had difficulties coping with the loss of control and uncertainty.The SPMS diagnosis had not a significant impact on him as he had already lost everything he valued after his initial diagnosis. He reported a lack of sensations, trouble with thinking, very severe pain, tremor and diagnosis of depression. He knew that stress made his symptoms worse but could not do anything to control stress.She did not expect to transition to SPMS and was shocked. She thought she had a relapse. She reported difficulties with mobility, fatigue and pain. She did yoga and meditation to manage her pain and has learnt how to pace to manage her fatigue through workshops organised by her MS nurse. She had a positive outlook that helped her cope with MS.
Second interviewHer pain and fatigue were more severe compared with her first interview but mobility remained the same. She was diagnosed with another autoimmune condition and with depression. She felt low and isolated. She was worried about her other condition and was disappointed with the lack of support from health professionals on how to manage her conditions.His fatigue and pain were more severe compared with his first interview, and he lost bladder control. Depression was still present. Feeling isolated and completely depleted of energy. He did not think there was anyway to manage fatigue or pain or that anyone could help him.Her fatigue and pain were worse compared with her first interview, and she was not able to exercise anymore. She was diagnosed with another long-term condition. Her healthcare team always had good suggestions on how to manage her symptoms for both her conditions.
  • MS, multiple sclerosis.