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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
  1. PD Parkinson’s disease, DBS deep brain stimulation, ATL anterior temporal lobectomy, ADL activities of daily living