Table 1 Characteristics of reviewed studies exploring expectations of candidates for functional neurosurgery (DBS and ATL)
From: Assessing preoperative hope and expectations related to functional neurosurgery: a new questionnaire
References | Surgery | Sample | Method | Domain of assessed preoperative representations |
|---|---|---|---|---|
Reddy et al. [40] | DBS | 22 patients with PD | Ad hoc questionnaire: Patient Reported Outcomes in Advanced Parkinson’s disease scale (PRO-APD) Patients were asked to rate for each question: (1) the symptom severity, (2) the expectation for change after therapy: − 3 (expected to be very much worse), to +3 (expected to be very much improved). | Motor domain: tremor, stiffness, off periods, dyskinesia, freezing, dystonia, speech, balance Non-motor domain: swallowing, sleep, bowels, bladder, pain, fatigue, sexual function Cognitive/psychological domain: concentration, memory, impulsive behavior, hallucinations/psychosis, mood, anxiety, apathy Social and ADL: self-care, work, leisure/hobbies, socializing |
Maier et al. [33] | DBS | 30 patients with PD | Semi-structured interview regarding preoperative expectations | Health: motor improvement, reduction of medication, improvement of walking, improvement of tremor, less dyskinesia, improvement of general health ADL: carry out hobbies, car driving, trips, travels, Social: more socializing, improvement of partnership Psychological: improvement of quality of life, improvement of mental state |
Nisenzon et al. [43] | DBS | 148 patients with PD | Modified version of the Patient-Centered Outcomes Questionnaire (PCOQ-PD), patients were asked to rate for each domain: (1) Usual levels of difficulty over the past week, (2) success criteria, (3) expectations, (4) importance | Health: Pain, fatigue, tremor, stiffness in limbs, slowness in movement, walking problems, sleep Psychological: Emotional distress, thinking ADL: Interference with daily activities (work, leisure) |
Törnqvist et al. [37] | DBS | 8 patients with essential tremor 8 patients with PD | Semi-structured interview Standardized open questions: What motor/social activities can you perform today/ would you like to be able to perform when your tremor has decreased? | Motor activity: housekeeping, hygiene, eating and drinking, writing, working, leisure activities Social activity: being with other people, participating in social activities |
Baca et al. [39] | ATL | 389 patients with epilepsy | Ad hoc questionnaire based on the literature and clinical experience 12 items, each item rated on a scale from 1 (not at all important) to 10 (extremely important) | ADL: driving limitations, limitations in bicycling, swimming, other physical activities Social: participation in social situations Health: level of fatigue, cosmetic physical aspects, pregnancy concerns, having to take epilepsy medications Psychological: emotional well-being, memory problems, language problems, concentration or attention problems, economic worries |
Baca et al. [39] | ATL | 391 patients with epilepsy | Interview Open-ended questions about expectations for surgical outcome - “In what ways do you feel limited by your epilepsy?” - “What do you most hope to change as a result of this surgery?” | Expectations endorsed by > 15% of the sample: driving, job/school, independence, seizure cessation, social functioning, quality of life, medication discontinuance, physical activities, cognition Expectations endorsed by less than 15% of the sample: embarrassment/stigma, emotional, fatigue, general health, family planning, no limitations |
Salgado et al. [42] | ATL | 73 patients with epilepsy before surgery 63 patients with epilepsy after surgery | Validation of the pre-surgery expectations questionnaire 18 yes/no questions | Health: take less anti-epileptic medication, be healthy ADL: drive, work or study, take care of my house / of my family, have fun, be safe to hang out alone Social: have children, improve my social life, marry, improve my sexual life, be accepted by my family Psychological: improve my memory, be happy, be less worried, feel free, be less nervous, feel ordinary |
Wheelock [48] | ATL | 32 patients with epilepsy 17 significant others | Semi-structured Interview about Epilepsy Surgery (SIAES) (1) Ways in which seizure elimination would affect the patient’s relationships with significant others (2) …would be a good or positive change (3) …would be a difficult or negative change | Have more friends, be less dependent, others will worry less, marital and family relations will improve Be able to drive, to work, continue education, do more activities, mood improvement, risk of injury or accident eliminated, reduces medication, anxiety eliminated, not feel as seek, not feel tired Negative side effects of surgery, less attentions of others, face new responsibilities, no longer need of significant other |
Wilson et al. [36] | ATL | 60 patients with epilepsy | Standardized, semi-structured clinical interview (1) What is the main reason you have sought surgical intervention? (2) Do you see the operation as a chance to change your life? (3) Have you made any postoperative plans? (4) Do you plan on engaging in any new activities/ hobbies postoperatively? | Health: seizure ablation, medication ADL: driving, employment, independence, new activities Psychological: self change, general improvement Social: family, relationships |
Rose et al. [38] | ATL | 17 patients with epilepsy | Ad hoc questionnaire The Epilepsy Expectations Questionnaire (EEQ) Responses are based on future expectations (1 year), rated on a 7-point Likert-type scale ranging from 1 (I do not expect this) to 7 (I very strongly expect this) | Physical health, epilepsy medication, seizure frequency Mood, quality of life Social adjustment Driving, occupation |